Sunday, 31 March 2013

Happy Easter!

Image courtesy of http://chibird.com/
Happy Easter everyone! I hope you've all had a lovely day filled with lots and lots of chocolatey nommyness!!

S.

Wednesday, 27 March 2013

My story: Aubree Deimler.


I was officially diagnosed with endometriosis in April of 2011, but it’s been in my life from the start, as my periods have always been VERY painful. At a very early age my mother taught me the power of the heating pad.

I complained about my painful periods to my family doctor and he wrote me a prescription for Ibuprofen, the pain written off as “normal”. After further complaining to my doctors, when I was 17, I started taking birth control. This really helped my period pain, but brought with it less obvious side effects.

As a teenager and young adult I suffered with digestive issues - bloating and at times embarrassing gas. I struggled with headaches that I got just about every day and was prone to migraines. To resolve, I’d pop an Excedrin, Ibuprofen or Tylenol.

I treated my body poorly during this time. I ate lots of fast food, sugar, soda, and alcohol and did my share of drugs. My self-esteem was low and I experienced strong bouts of depression.

Early in my twenties I had “abnormal” pap smears and went under a number of procedures and biopsies of cells in my cervix to rule out cancer. This was a rough time emotionally and physically. In the years following my last procedure I continued to have sharp pains in my pelvic area. I experienced abnormal bleeding prior to my period and after sex.

I approached my gynaecologist about it and it was brushed off as part of the healing process. I didn’t like this answer. I knew something else was wrong. The pain continued and when I switched gynaecologists she took it a step further and ordered an ultra sound.

For subsequent months these ultrasounds revealed cysts on my ovaries. They showed up often during my follicular stage, causing very sharp, gruesome pains prior to ovulation. These cysts were also written off as “normal”, and since they went away each month, not to be concerned about.

Late in my twenties, I started to question the impact the added hormones were having on my body, and made the decision to get off of birth control. This decision awoke a whole new level of pain. My periods were excruciating again!

I missed days of work when my period came around. I was unable to do anything but spend long hours rolled in a ball with my heating pad in SO much pain. The pain convulsed from my centre and shook every part of me as though my nerves were on fire! My uterus contracted in a way that I imagine competed with labour pains. The pain was relentless and lasted all day long.

Time passed and I continued to refrain from birth control. Each month my pain worsened until the pain extended to a near daily occurrence. The pain spread to my lower back, to my bladder, bowels, all the way down my legs. I had increasing pain up until ovulation and this continued, intensifying until the onset of my period. My periods got much worse and were accompanied by awful diarrhoea and nausea.

I was exhausted - all the time.

After watching me suffer for some time, my co-worker suggested endometriosis to me. I had never heard of it. I did research online and spent sometime perusing endo forums. I related very much to the issues the women were bringing up. I had all the symptoms...

I suggested endometriosis to my gynaecologist and she agreed that it could be a possibility, but the only way to know for sure was to have surgery. She suggested getting back on the pill or taking Lupron - a drug that would send my body into a state of menopause.

I didn’t want to get back on the pill and after reading about Lupron in multiple endo forums and its negative consequences, I chose not to go down this route. And surgery? I couldn’t afford that.

As the days passed, my pain intensified. I was miserable and exhausted. The pain brought tension between my husband and I as it affected my whole insides. Sex was painful and left me feeling horrible for a couple of days afterwards. The practise brought with it a fear of pain (from both parties).

I continued to do research about endometriosis online and found more and more of a connection between diet and inflammation/pain. I came across Carolyn’s story on Endometriosis Resolved and spent a lot of time reviewing her endo diet and the other information on her site. I decided that it couldn’t hurt to try and change my diet.

In January 2011, I cut gluten, dairy, soy and coffee out of my body. This was hard, and frustrating as I realised that this made up a lot of the food that I was eating on a daily basis. After a couple of weeks I did start to question my motives. Was the diet change worth it? Did I really have endometriosis? I really wanted a slice of pizza!

When people asked me why I’d changed my diet so much I didn’t have a solid answer. Many assumed I was a coeliac. I resorted to saying it was due to “digestive issues”, which indeed it was. I didn’t feel comfortable bringing up endometriosis because I wasn’t positive that I had it.

These doubts nagged in my mind and eventually lead me to schedule a laparoscopy in April 2011. It was then that I was officially diagnosed with endometriosis. I felt better having the diagnosis, but not so great about the consequences of this now named disease - no cure... Only going to get worse... Infertility.

My bouts of depression increased and I spent a lot of time in tears... And pain. My period pain worsened following my lap to a point that I considered getting back on birth control.

Luckily I came across Melissa’s blog, Cure Endometriosis. I related to her so much. She offered a lot of natural alternatives to healing endometriosis and helped me to connect endometriosis with a weakened immune system. I learned that the majority of the body’s immune system is located in the gut; so I started to focus on improving my digestion.

I heard about Vitalzym from another endo sister and after reading about all its benefits I decided to give it a shot. Vitalzym is a blend of digestive enzymes that help the body break down food. One such enzyme is serrapeptase - which helps aid inflammation in the body, reduces cysts and eats at scar tissue in the body.

To further aid my digestion, I also started taking a daily pro-biotic.  

By focusing on improving my digestion, while keeping with my elimination diet, I did start to feel better and this gave me hope.

Once the pain started to decrease, I grew even more interested in natural healing methods. I continued to research and tried out different suggestions. Along the way I became more in tune to my body and the way different things affected my pain levels.

I believe that the biggest factor in my pain is stress. To help keep my stress levels in check I do yoga on a regular basis. My favourites are Hatha and Kundalini. Yoga helps me keep a clear head and has taught me the power of the breathing, especially in times of stress or pain. I believe this practise has been huge in me getting better.

I have also taken up meditation and have gained knowledge on the power of mindful thinking and awareness to keep my mind and attitude positive. I believe that controlling the mind is a huge factor with healing endometriosis and that true healing needs to come from a deep place within.

I am happy to report that I am down to only one day of pain now with the onset of my period and most of the time this pain is manageable. It is not as intense as it once was. My digestive issues have been pretty well eliminated! My daily headaches are no more. I feel more energetic and better than I have in a really long time.

Endometriosis has taught me a lot about myself and has introduced me to a new way of life that I otherwise may not have chosen. It awakened urgency for re-gained health and an important re-focus on ME - what’s best for my body, and soul.

I believe that we can beat endometriosis and that diet and stress reduction play a huge role. I believe that we can get our bodies back in balance by giving it what it needs.

I would not be where I am without endo sisters spreading the message and hope of following a natural journey to heal endometriosis. To join forces I started my own chronicle of my natural journey at Peace with Endo. If you’re interested, please check it out!




Thank you for sharing your story Aubree.

If you would like to contact Aubree, you can follow her on Twitter @peacewithendo or on Facebook. You can also visit her website over at Aubree Deimler.


Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.



S.

Tuesday, 26 March 2013

My story: Babette Gray.


My name is Babette Gray and I am a pelvic pain advocate and business owner of Pelvic Pain Solutions who is passionate about helping others manage their pain.


Like so many women in this world who are struggling to live with chronic pelvic pain, I share a deep understanding and empathy for what they are going through with my own 13-year battle with endometriosis, severe anaemia and ongoing pelvic adhesions.


At the tender age of 5, I was thrust into the word of pain due to a freak accident where I suffered trauma to my pelvic floor from a slide accident at the local playground. Upon my harsh landing, the heel of my Keds shoe struck deep into my pelvic floor causing instant bleeding and excruciating pain. My first thought was I just urinated all over my overalls and my mother was going to kill me until I saw blood quickly saturating my clothes. This event would become the beginning of a long, painful journey with chronic pelvic pain.


After struggling with ongoing, debilitating menstrual cramps and heavy dysmenorrhea, I was finally diagnosed with endometriosis at the age of 27 through a laparoscopy. I began to learn of my options, if any, to manage the disease. I was given monthly injections of Lupron, which is compared to chemical menopause, for a six-month treatment to shrink the endometrial tissue. Just into my third month of treatment, my body began to exhibit the harsh side effects. I lost nearly 15 lbs on my petite frame, suffered severe insomnia, night sweats, and depression not to mention the toll it took on my marriage as a newlywed. The six-month treatment allowed my endometriosis to shrink and ultimately, I was symptom-free for over one year.


The thought of living with endometriosis was again a true reality when I discovered that it returned. I suffered two involuntary miscarriages in my late 20’s and early 30’s; my delicate body could not handle carrying a child. Sadly, during this time in my life, my marriage would end due to the constant mood swings and bouts of pain that would cause my emotions to go up and down, the ongoing doctor visits, the financial strain - the list goes on and on.


Finally, at the age of 40, I hit a wall. My body could no longer get out of bed to go to work. The ongoing heavy bleeding brought on severe anaemia  Just getting out of bed was a huge task; I looked weak, pale, and my employer was beginning to show concern over my excessive tardiness. I finally decided to give myself the best birthday present - a supra-cervical hysterectomy!


The day of my hysterectomy, I was by far the happiest patient in the recovery room. Even though I was in pain from the surgery, I already felt better. Once my body healed, I was happy, vital, and full of energy like never before. My endometriosis was removed and there was no sign of it returning. I managed to keep my right ovary so I was producing my normal cycle and had my hormones.


I consider myself to be one of the lucky ones as I have heard horrible stories of the continuous pain my customers endure after having such radical surgery! The only downside that I have from the surgery is adhesions. Overall, I could not be happier compared to the daily stabbing pains and blood loss from having endometriosis.


Throughout the course of my career, I have struggled maintaining a good attendance record due to having endometriosis. I have learned that employers are not as understanding as had hoped nor will your co-workers understand how you can “look” healthy but otherwise be quite ill. Slowly but surely I learned to form a protective barrier around myself in order to avoid the negative remarks being said. Over time, it does break you down and takes its toll on your morale and overall outlook on life, people, and the world, in general.


Nearly two years after my hysterectomy I discovered that adhesions had formed during my surgery. At first they did not seem to bother me, but over time I felt like a puppet on a string. The pain was different; however, sadly it brought on more sick days at my workplace.


I began to understand that the life I thought I intended to live truly was not the life I could actually do. With little to no support from my employer, I decided to make a change and start my own business to help other women who are going through the same situation.


In retrospect, I believe living with endometriosis enabled me to utilise certain skills I did not yet know existed. I would soon discover the common thread I shared with so many people and from that, a business idea would be borne.


During my last 3-4 years working for my employer, I designed a special heating/cooling pad that hugged my stomach and pelvic area providing me long-lasting heat. I was thrilled at how well it performed and used it daily to relieve my pain. I owe the EndoFEMM® Pad’s design for prolonging my inevitable hysterectomy for an additional three years! My dependency for pain medications lessened, my body could relax, and I slept more soundly.


After a successful Product Focus Study with the prestigious Endometriosis Research Center where they determined through their findings that the EndoFEMM® Pad was a viable product to reduce pelvic pain, a business was started. I officially had my first website in November 2006 and began to sell the EndoFEMM® Pad almost immediately.


As the President and owner with a local manufacturer, I have single-handily spread the word about my pelvic therapy pads through Facebook, Twitter, Linked In, and other network portals. In addition, through hard work and sheer determination, more and more doctors and physical therapists are learning about my products and its effectiveness in relieving pain. I cannot exclude my wonderful and devoted customers who continue to provide their support to help spread the word to family, friends, doctors and physical therapists.


No matter what age a woman is, sadly at one time in her life, she will experience pelvic pain. My customers range from 12 to 80 years of age! I am just one woman among thousands who understands the daily struggle of living with pelvic pain who is trying to make a difference. My drive comes from the women I speak to every week who inspire me to keep going. It is my hope to someday “pay it forward” as well.




Thank you for sharing your story Babette. 

You can view Babette's website here where there is also a link to her blog. If you would like to contact Babette, you can follow her on Twitter @endofemm or on Facebook, or alternatively, email her directly at babette@pelvicpainsolutions.com.


Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.


S.

Sunday, 24 March 2013

One of those weeks.


Ugh. I've not had the best of weeks. I've been sat on this post for a few days because I've been feeling so rough and I knew I had to get something done today but I've just been sat here with a blank head. I thought I'd just update you all though on my week instead of escaping in to my ball of comfort... Which is where I'm off to in a bit!

I was ridiculously angry on Monday. I found out from the DWP (after I called them again) that I don't have to wait for any forms to arrive to make my appeal to them regarding them stopping my benefits. I can in fact just write them a letter. He checked the records of my phone call to them last week and the woman I had spoken to had signed the call off as 'no further actions required' - apparently she had sorted out everything on the line for me. I went mad at the poor chap on the other end of the phone but he explained everything so clearly that I apologised profusely! I only wish I had spoken to him a week ago instead of that stupid woman. So, on Wednesday, my appeal was sent off to them and now I can only wait with my fingers crossed. I couldn't have really written any more down for them and my letter ended up being 7 pages long with a copy of my report to support the comments. Plus, I don't think I mentioned it in my previous post, but my dad was so angry about the report that the DWP had sent me that he got straight on to our local MP and they said they would help. I spoke to her office on Friday and they are sending a back up letter in to support my case so I am really happy about that. Even they couldn't see how I had gotten zero points from the things I was saying. As soon as I hear anything I'll let you know but I know as soon as it goes in to appeal stage I should receive around £71 per week so at least that's something.


I had a doctors appointment on Wednesday and my mama came over to help me get there. I told the doctor how bad the pain had been since I had reduced my Tramadol dosage so I'm back on to my original dosage now of 150mg slow release twice daily and, although they have once again knocked me for six, the pain has been much easier to manage. In fact, I've found I've been sleeping a little better at night because I'm not aching quite as much. Today, however, is an all-the-painkillers-in-the-world type of day (insert sad face here)! She also wants me to remain on my higher dosage of Citalopram for another few months and I have to say, I think I'm finally seeing some benefits from them. I've still been upset about things but, whereas usually this time of the month would have me deep in my hole by now, I'm actually finding things easier to cope with... And I've not been able to say that it a long time. I also mentioned my twitching to the doctor because it's been gradually getting worse and worse recently. I have just assumed up until now that it is a side effect of my Tramadol but I have to go in for a blood test to check my calcium levels. I checked later on how calcium levels can affect the body and it can make you twitch if your levels are too high or too low. Well, it's definitely not going to be too high (!) but I just have to wait and see. But it has made me a little concerned. I'm starting to worry now that maybe some of the issues I'm having that I've just put down to endometriosis, could in fact be something completely different. Obviously though, looking at things on the internet always leads to you self diagnosing with cancer or some other deathly condition. I'm just going to keep an eye on my symptoms and keep my fingers crossed again that something is figured out so I can get rid of the twitches!


Another good thing is that I finally have an appointment for my liaison psychiatry which is this coming Thursday. Initially I was going to have to cancel it because it's a good 40-50 minutes drive away and there was no way I could get there, but luckily, the boy has this Thursday off with it being Easter, so I can now get there! Finally, I'm going to get some issues sorted out!


My period started on Wednesday - a week early - and I've been feeling really bad with it ever since. Today has been the worst though. Out of no where, the pain came on, aching down my legs and back and of course, my tummy. I'm just so exhausted with it all. I'm looking forward to a nice back rub later from the boy and I think that's all that's keeping me going today!


Apart from that, I've dyed my hair bright red, which I'm not 100% sure on yet, and then I've been planning out a few bits and bobs with the boy and working on the blog again. We spent last night with some friends also and that was lovely. Oh and the weather has been mental here this week! It has just turned to Spring and the UK has been covered in snow! But I was happy to get out in it a little, since I had missed it all last time it snowed!


One last thing, before I go and rest!... I hope you all read my "Bye Bye Google" post from this week, but if not, have a read and please head on over to Bloglovin' to follow EMLWY!


S.

Friday, 22 March 2013

My story: Carrie Madigan.


My name is Carrie and I have been suffering with endometriosis for four years. Here is my story...

My husband and I started trying to conceive back in November of 2009. I was 27 years old and very excited.  About seven months later, I found out I was pregnant. The timing didn't seem right with my cycles, but my blood test came out positive. Since the pregnancy levels were on the low side, I had to go in the next day for another test. Unfortunately, my levels went down and I had my first miscarriage. So, my OB of course said - well, the good news is that you got pregnant.  I went on hoping it would happen again soon.


Two months later, I started having weird pains on my right side. I decided to make an appointment with my OB after several days of pain. When he examined me, he felt a knot on my right ovary. After having an ultrasound, they found a large ovarian cyst the size of a grapefruit. I had my first laparoscopy surgery to remove it and found out it was an endometrioma. The doctor was able to save my ovary, which was great news to me.


A month later, I started having the same pain on the same side - only this time it was worse! My husband took my to the ER where we found out I had another cyst the same size on my right ovary again. The hospital thought I never came in for the first surgery. I was heartbroken. I thought this was taken care of. I went through my second lap and this time, they had to remove my right ovary and fallopian tube because of the damage. My doctor also told me he cleaned out the rest of the lesions and scar tissue from the endometriosis. Everyone kept telling me I still had my left ovary and I should be fine. I couldn't help but feel scared. My doctor put me on the 3 month Lupron shot to try to stop any more growths. I was again heartbroken to hear that I would not be able to get pregnant for at least four months.


My husband and I decided to make an appointment with an RE. I was told during this meeting the only way I would get pregnant is through IVF. Since I had a feeling this was coming, I wasn’t too surprised. Once I got my period after the Lupron wore off, I went in for a follicle count. I had 27 follicles on my left ovary! Great news! Then the bad news - I also had a small cyst. My RE recommended I go in for a third surgery to remove it. We decided to go for it and I had my third lap. Unfortunately, that was a bad mistake.


That summer after my third surgery, we met with another RE to set up for our first attempt at IVF. The doctor was pretty positive that we would have a good outcome because of my age and number of follicles still in my one ovary. We signed all the paperwork and ordered all of the medicine. When it came time for my ultrasound, I was relieved to find out I did not have any cysts. I called the office later that week to make sure everything was okay to start the medicine.  As it turned out, my high follicle count turned into a very low count. I only had one follicle. How did I go from 27 to 1? They recommended I didn't even attempt IVF. I was again heartbroken.  The doctor blamed it on the third surgery and said too much of my tissue was taken. I was so frustrated. We went ahead and tried mini IVF instead (same idea, less medications). During this cycle, I had three follicles, but they were not responding to the medicine. I was devastated and frustrated. In fear of getting another cyst, I decided to go back on birth control.


In the mean time, my identical twin sister was pregnant with her third child - having no problems with any of her pregnancies. When I brought this up to the doctors, they said the reason she had luck was because she started her family earlier. Knowing this was going to be her last, I asked her about egg donation. Of course, she was willing to help me in anyway. I was so fortunate to have her. Five months after she gave birth, we went into a new office and started talks of IVF with a known egg donor. All of the initial tests came back good and we were on our way. Her follicle count was 55. I couldn't believe it! We thought for sure we would get plenty of embryos. The medication wasn’t too bad. The progesterone shots were not great. My husband had a whole song for me before giving it to me. You have to laugh about this stuff some how. My sister did great. After the procedure, they were able to get 32 eggs. Out of the 32, 28 fertilised. On day 3, 2 of the embryos looked good and we went in for an embryo transfer. I got a call two days later that they were able to freeze 2. I know I should be lucky that they were able to freeze any of them, but I just couldn't believe we went from 28 down to 4. This whole process is just a big game.


Two weeks later, I found out we were pregnant! But again, my levels were low. They had me come in two days later only to find out they went down. I was having a second miscarriage. Once again, I was heartbroken. Thank goodness my twin sister was in the room with me when I found out. It took me a couple days to process everything. I just hung on to the hope that the next transfer would work. The plan was to get ready for the next embryo transfer after my next cycle.


In the meantime, I just wanted to escape. My husband and I decided to take a trip to Mexico to get away from reality for a bit. The week before we left, I started getting really bad pains in my left side. I just knew it was another cyst. Since we were leaving in a couple days for Mexico, I made an appointment with my RE. When I went in for my ultrasound, I was surprised to hear that it was actually a follicle and I was getting ready to ovulate. I was surprised to hear that my body was actually working. The nurse told me to get busy. I remember thinking that it was a good thing we were going on vacation. We didn’t think much of it and headed out for our trip. Two weeks later, I got the surprise of a lifetime - a positive pregnancy test! I was in shock. After everything we went through - the shots, the money, the procedures - I was able to get pregnant naturally. The next ten months were nerve racking.


On March 6th, I gave birth to our son.  He was perfect and such a miracle.  


Endometriosis has made my life very difficult. Having to go through infertility is something I would never wish on anyone. It is mentally and physically exhausting. I am so fortunate to have my husband. He has been so supportive through everything. It was and still is so hard feeling broken. And I can’t thank my twin sister enough for what she did for me. We still plan on using the frozen embryos soon. In the mean time, I am trying to conceive naturally again.  


I hate living in fear of my endometriosis. I am so scared that I will have another cyst. I pray and pray everyday that my left ovary stays healthy.


What I want to tell people with endometriosis who are trying to conceive is don’t lose hope. A very well known respected doctor told me that I would never get pregnant. Life is full of surprises and miracles. Always believe.




Thank you for sharing your story Carrie.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.


S.

Tuesday, 19 March 2013

Bye bye Google reader.

Image courtesy of http://chibird.com/
Hello lovely people... I just want to give you a bit of a heads up on something I found out at the weekend. I know 50 of you wonderful people follow EMLWY via Google Reader and, well, this affects you lot.

Google announced last week that they are binning the Google Reader function (and potentially Google Friend Connect too), which is a bit of a bummer really. The service is being shut down on 1st July 2013 so I wanted to give you a bit of notice so you can carry on reading my posts!... Which I really hope you would all like to do!


There are still other ways to follow me, such as subscribing to EMLWY via email (just enter your email address in to the box on the left side of the blog and my posts should be delivered to your inbox) or via Hello Cotton (just click on the Hello Cotton button on the left). But, I'd really love it if all of you could hop on over to Bloglovin' and follow me there. You can categorise blogs into different groups and mark certain posts as read or unread so you never miss a post from your favourite bloggers. You can also then either read posts from the blogs you follow on the Bloglovin' website, app or have them emailed to you. It's a really great service and it's free so please check it out. All you have to do is click on the big Bloglovin' button on the left of the page. There is also a post here from Bloglovin' on how to import the blogs you follow with Google Reader to Bloglovin'. Very useful!


Other than those, you can also follow me on Twitter and Facebook (although you won't be able to see exactly when a blog post goes up on them - though I do try to update them as often as possible), and hey, while we're at it, you can also follow me on Instagram and Pinterest!


I've worked hard to get all of you beauties following EMLWY and I certainly don't want to lose you now! Your support really does mean the world to me and I love receiving emails and comments (even if I am the worst person in the world at replying... Something I am in the process of changing!).


Keep reading peeps... And hello to all you new readers who have started following the blog recently! 


Muchos love!


S.

Sunday, 17 March 2013

Financial woes and general heartache.


I haven't been on here for a little while (as hopefully you will have noticed) and I've been hidden away from everything and everyone again. I entitled my last post 'the worst week' but boy was I wrong. Things got much worse and I haven't been coping well at all.

I'm still in a lot of pain on a daily basis. Now, doing something on one day is regularly followed by a day of doing nothing. The pain and lack of energy mean I am house bound for a good 24hrs after any enjoyment. The sharp pains around my ovaries are agony and hurt like hell if I move my legs. Still. No matter how many tablets I take, the pain still shoots me down, usually when I am least expecting it. I can rest all day and the pain gets me or I can be busy all day and it gets me. I can't seem to win. Night time is the worst though. I just cannot get comfortable in bed at all now. Both hips ache with the pain and numbness and I spend a good portion of the night just trying to find a pain free position - let alone trying to switch off my mind. The twitching is now at another level too. I dread yawning because it makes my entire left side spasm. I woke during the night last week to find my whole face twitching too, which really wasn't fun. My chest has been hurting over the last few days as has my shoulder - all because of my diaphragm. And yeah, the wetting. The wetting is there all the time. It never let's up. If I'm not bleeding, I'm wetting. SOMEONE TAKE ME TO THE VETS AND GET ME PUT DOWN!!


My mind is a never ending roller coaster of incessant thoughts. It's keep me sad during the day, awake and worrying during the night. I just can't switch off. The higher dosage of Citalopram doesn't seem to have made any difference in my moods, though, I'm not as tearful. I think my body has ran out of tears for the time being though. I've spent most of the last 2 weeks just sobbing.


You might be wondering why I've hidden myself away in my emotional ball. Well, let me explain.


I can't go in to too much detail on the first point, other than, well, someone close to me has had something happen that's going to change their world forever and it's something that I've been trying so desperately hard for. The boy has been trying to support me through it but he has been upset too. It's been a tough old time for us both. But I'm trying my hardest not to be selfish and to be happy for this person. They know how I feel and understand why I am so sad. I can't really bang on about it much more than that. But my heart aches right now and there's only one thing that could take away that desperate longing.


Secondly, after a week of being more down than ever before, I received some great news through the post. Great meaning absolutely beyond f****** b******* (beep beep). Monday just gone, I received a letter from my lovely friends at the DWP (Department of Work and Pensions). Only a week or so after the last letter said I'd be getting around £2 more a week, this new letter said that basically, because I can lift my leg a few inches and lift a box I was never asked to lift, oh and because I can sit on my arse all day watching TV, I can work. Yes, you've got it - my ESA (Employment and Support Allowance) has now been stopped because I am 'fit for work'. I genuinely thought my assessment a few weeks back had gone well (for me). It was my first time out of the house since my operation, I still had stitches in and was still in recovery so things were very difficult. I was honest about everything, the same as I had been last time and told the lady exactly what I could and couldn't do. She saw what medication I was on and she saw the letters from the Prof. I couldn't have done any more to help my situation out. But the report I had back from the assessment states the exact opposite. In some parts it says I could do things (like pick up a cardboard box - which I wasn't even asked to do) and things I had stated in the assessment were written down as the complete opposite. The report basically says I'm a complete liar and I have no problems at all. Everything I said I had trouble with are mysteriously not on the report and things like my wetting problem - which you all know I have been suffering with for a good while now - are basically written off. I apparently don't wet enough to have to change clothes and I'm not having any treatment for it. Really? That's not what I said in the assessment. I had such a tough time with that assessment with it being my first time out and how much pain I was still in. I couldn't even find anything to wear because I couldn't have any leggings, skirts or trousers pulling tight on my tum. I had trouble walking in, trouble pulling out my chair, trouble opening the door getting out again. It's almost like the report is written about someone else. It hurts that someone would do that when you sit there, crying, and pouring your heart out. I am not a scab and if I could get back to work you all know I would. I am desperate to have that life back. I've worked bloody hard up until this all flared up last year and yet people think I am lying. This country really is amazing. Support those that lie but chuck those people out with the rubbish that need help the most. So now I have no money. I had my last payment last week. I have no way of paying any bills but I'm lucky enough to have the boy and my parents here to support me. Not that the DWP care. As far as they care, I can sort myself out. Well, thank you DWP. I am now up shite creek completely. No life, rubbish health and now no money. No money to even get the prescriptions I need.


I've been so very stressed out over everything. I really cannot see what I can do. I know I can appeal (another thing the DWP aren't moving their arses on - I called on Monday for the forms and they've still not arrived) but that's not only more stress, it's also going to put my family out again as someone will have to take time off work to take me over to Leicester for yet another assessment. I am just completely lost for words. I never thought someone could look at me and my situation and say there isn't anything wrong!... I blummin' wish!!!


So that's pretty much how the last few weeks have been. I've been in too much pain to really do anything. Just the odd wander around town. Not that I can afford anything now. I bought a record from the charity shop on Friday and felt guilty for 'wasting' £1.50 on that. The poor boy is having to spend his money on supporting both of us with food right now.


Well folks, that's my news. But you know, this blog and everything I've said above and ever before / felt / cried about / stressed about etc etc is a complete load of crap - according to the DWP of course.


S.

Wednesday, 6 March 2013

The worst week.


I've had a really crappy week since my last post. I mentioned that my period was late, well that night, my period started and boy, didn't I know it! I had a shower and had the strangest feeling in my tum. By the time I was finished, I couldn't even make my way upstairs again. When I did finally get back to my room, I just sat on my bed, curled up in agony and sobbed. It got to a point where I was worried I was going to end up in hospital again because the pain wasn't easing at all, even with Tramadol, Ibuprofen and Paracetamol. I eventually cried myself to sleep and prayed that I wouldn't wake throughout the night... And that's really how I spent the rest of the week too. In pain or crying. What a great week to have reduced my dosage of Tramadol!

The pain eased a tiny bit but it was still very bad and my period was so heavy it was just pouring out. I woke on Friday and spent the whole morning crying. I was just so absolutely fed up with the pain and angry at the world. Angry that I'd put so much on to this surgery working and then still being the exact same afterwards. I thought by now I'd be looking for work again and looking for our little house. But no, I'm still stuck at home, sitting on my bed, watching the world go by outside my window. Everything is exactly the same. I went through all those months of waiting and pain and anxiety of the operation for nothing. I really am at the end of my tether with it. How am I supposed to ever get back to work like this!? Every time the boy managed to calm me down, I'd start balling my eyes out again. I wanted to make him see that I am this worthless nothingness. That he could find someone so much better than me that could give him everything he wants. He would be able to have a life again that wouldn't involve fetching me cups of tea and sitting in my room all the time. He wouldn't have any of it though, just saying he wants me forever. Nothing else. But I constantly feel so guilty for having taken away so much from him. It's not just my life that this disease has taken, but his too. I am just utterly fed up with this situation and lost on what to do.


One good piece of news arrived in the post later that day. Looks like the DWP have granted me the benefits I need again. In fact, they go up in April by a whole £8 a month! I'm really relieved. At least that's that for another 6 months or so... Though I just realised I never told you all how my second assessment at the end of January actually went. I will eventually get around to a post on all of that!

So, yup, that's been my week. I've not been able to get out because of the pain so I've just been resting lots. The pain is easing slowly now though so I'm hoping to get out this Friday for a little bit of shopping with the boy... Fingers crossed anyway. I've just got to take it day by day still at the moment.


S.

Tuesday, 5 March 2013

My story: Endo Star.

Image courtesy of http://www.psdgraphics.com
My periods started the week before my 11th birthday. They weren’t painful or heavy to start with but they were irregular and a bit of a nuisance, which I guess is pretty normal in the beginning. By the time I was 12 they had got much, much worse and were heavy and painful. The pain got so bad it was causing me to vomit and pass out, I was getting migraines, and I was missing school because of it. I would spend my time curled up on the bathroom floor waiting for the pain to pass. I went to my GP who decided to put me on the contraceptive pill and give me mefenamic acid (Ponstan). I also got tested for anaemia because the bleeding was so heavy, but that came back negative.

The pill seemed to help with the heaviness, but I still had the pain. I thought it was just one of those things and I was one of the unlucky ones. By the time I was 13 we had moved to a different area and I had a new GP. I spoke to them about it throughout my teens, and must have tried about 5 different variations of the pill during that time. During my GCSE's it was really bad, and I remember my GP saying to me it wasn’t normal to have this pain, and that he’d keep trying to help make it better. Sadly he left not long after that so things didn’t quite go to plan! I got stuck with a different GP and I think I just got used to being in that much pain during my period, I sort of gave up on finding anything that would make me better.


A few more years passed by, I started working full time and moved out of home. I carried on taking the pill and using ibuprofen and paracetamol to help with period pain, which I had just learned to put up with. When I was 21 the pain went up another couple of notches and I was finding it hard to cope with it again. I had to start taking codeine which only really took the edge off, but I managed. My job meant I was on my feet for 8 hours+ every day, and looking back I don’t know how I did it!


A couple of years later when I was 23, I had settled at yet another new doctor’s surgery. By that point I’d started to develop new symptoms; I was feeling nauseous most of the time and barely eating, getting stomach cramps and constipation. This wasn’t normal for me so back I went to the GP. They did blood tests and various other tests to rule out any gastrointestinal problems, which all came back clear, so I was diagnosed with IBS. I was given tablets including peppermint capsules to try which didn’t seem to help me at all. I was fed up, didn’t believe I had IBS, and felt I’d been fobbed off. Yet again I just put up with feeling rubbish!


I also started getting urinary infections (or UTIs). I say these were infections, but rarely would a test actually show any infection, I just seemed to have the symptoms of one. I was getting one or two of these per month for about a year, which was pretty miserable as I’m sure you can imagine. I had just got together with my partner after being single for a while, so it was sort of put down to being ‘honeymoon cystitis‘. This problem was never investigated and thankfully it stopped happening after about a year, although some of the symptoms would crop up again in the future.


It wasn’t long before the symptoms got worse again. It seems like every time I got used to a level of pain or some symptoms, another would appear and the pain would get worse! I started getting rectal pain during and about 1 week after my period. It’s hard to explain this pain, but it felt like there was pressure deep inside, and sitting down was almost impossible. I knew this was NOT normal. I asked the GP about this and was told it was common to have pain there as the organs are so close together, and had I thought about getting pregnant? I was only 24 at the time and hadn’t been with my partner all that long! I saw another GP about it a couple of months later and they were even worse, they told me it was probably constipation causing the pain and to eat more fibre. I was made to feel like a time wasting hypochondriac. I can’t stress enough how upsetting this all was. I knew what I was feeling wasn’t normal, but no one would listen to me. What could I do?


This was around the time I first heard of endometriosis. I Googled the symptoms and couldn’t believe how familiar it all sounded. By this point I’d started having pain during sex as well but I kept this to myself, I was embarrassed by it. I mentioned endometriosis to my GP who more or less dismissed it, telling me the only way to diagnose it was by having a laparoscopy which was an invasive procedure, and should be avoided. We’d continue to treat me with the pill instead, but I would start tricycling, so taking 3 packs together without a break.


Another year or so passed and I was still getting this pain, and the IBS symptoms were making me miserable. It didn’t seem to matter what I ate, I would get bloated and/or feel sick. Yet another trip to my GP beckoned. I managed to see a different one this time, and she decided to refer me to the hospital to have an ultrasound scan. I needed to have a full bladder for it, and I just happened to have cystitis at the time. Nightmare! Every prod and poke was agony. They mentioned they couldn’t find my left ovary, and they did an internal ultrasound for that reason but it was still nowhere to be seen. ‘Probably your bowel getting in the way’, they said.


The internal ultrasound was probably one of the worst of all the tests I’ve had done! The thing was massive, and they moved it around loads inside which felt truly horrible. They didn’t seem too bothered about my missing ovary. Needless to say, my GP told me the scan was clear and finally referred me to a gynaecologist. While I was waiting for my appointment I had a smear test done. I’d had internal examinations done before so I wasn’t too worried about it, although I knew it would be painful for me. The nurse told me that she could see a cyst at the opening of my cervix and I should tell my gynae about it at my appointment.


I was so nervous about my first appointment with the consultant and didn’t know what to expect, but I had high hopes that finally I was going to be listened to and taken seriously. The consultant was blasé about my symptoms, and when I asked about endometriosis he said it was unlikely I had it. He thought it was probably just ‘one of those things’. I really felt like I was wasting his time and that as a woman I just had to deal with this pain and other symptoms. He did however agree to do a laparoscopy to find out for definite. I told him about the cyst on my cervix and he asked me if I wanted him to check it! I couldn’t believe his attitude. He told me it was quite large and would need to be removed, so he would do it during my laparoscopy. My surgery was scheduled for 3 months later, and I felt sick with nerves. I was torn about what outcome I wanted, I knew that if it was endometriosis I’d be stuck with it for life, but if it wasn’t I’d still be stuck with the pain as there would be no explanation for it.


For various reasons my surgery was cancelled twice, both times I was literally in the gown and stockings waiting to go to theatre. I was already extremely emotional and on edge so by the 2nd cancellation I was gutted. By now I was also struggling with anxiety due to the fact I permanently feel like I need to go to the loo, both my bladder and bowel always feel full which is so uncomfortable and makes me panic when there isn’t a toilet nearby.


Finally my surgery was going to go ahead (age 27 at this point). I was going to get some answers! I had a bit of a wait as I wasn’t first on the list. It wasn’t my first operation but I still felt a little nervous about the anaesthetic, my heart was racing and I generally felt quite anxious. I had no idea how much pain I was going to be when I woke up, or what they were going to find in there. I walked myself to theatre and lay on the cold table; the anaesthetist was lovely and made me laugh before asking me to relax and putting the cannula in my hand. I’m OK with needles, which is quite handy as I must have had hundreds of blood tests done over the years.


Next thing I knew, I was awake and having a bit of trouble breathing and swallowing. I tried to feel my tummy to see how many incisions I had but couldn’t move my arms properly yet. I could hear them talking about the pain relief I’d been given, Diclofenac and Morphine. I was quite lucky that I couldn’t really feel any pain at all. It wasn’t long until the nurses were asking me to get up and dressed, then the consultant came in. It wasn’t one I’d seen before, he was a locum. I was told they hadn’t found any signs of endo, but that my uterus was very badly stuck to my pelvic wall. He also said my left ureter was very high up, and that he thought there had been a developmental problem with my uterus. None of this really made sense to me, not helped by the fact I was still woozy from the anaesthetic! I sat there on my own thinking “I’m a freak! I’ve got an oddly shaped womb! I’m not going to be able to have children!” and then came the tears again.


I was so disappointed. I didn’t understand what had been found, and I didn’t have the answers I’d been longing for, for so long. I was booked in for an MRI scan 6 weeks later, which was another one of the worst experiences of my life. I was in the scanner for 45 minutes, being told when to breathe and when not to breathe, and listening to awful chart music in one ear as only one earphone was working. A couple of weeks later I went back to the consultant to get my results, and finally he confirmed I have endometriosis. He said it was ‘very bad’ and that my ureter was stuck to something due to endo, and my bowel was involved. I would need open surgery but he had to discuss my case with a urologist first. More waiting! I went back a month or so later to be told there was no point operating as I’d probably still have pain afterwards. That was the urologist’s opinion which I thought was odd, surely the gynae should be deciding these things?! I asked if there was anything that could be done, and he said to keep taking painkillers, get pregnant (that old chestnut!) and that I could get a second opinion if I wanted to.


I was angry, upset, confused, disappointed, and felt completely hopeless. My family and boyfriend were furious and wanted me to make a complaint about the way I’d been treated. I decided to get a second opinion from a specialist endometriosis centre in London; I knew it’d be a long wait so I paid to have a private consultation with one of the gynae's who work there. I have to say it’s the best money I’ve ever spent! He was absolutely fantastic, and has given me so much hope. My appointment lasted 30 minutes, he examined me, although beforehand he acknowledged that he knew it would be extremely painful which was a first for me. It was amazing that someone finally ‘gets’ it! To my horror he said he could actually see endometriosis – I didn’t even know that was possible. He explained that I have deep infiltrating (stage 4) endometriosis, involving the ureter, left uterosacral ligament and rectosigmoid colon, and that my left ovary is very stuck to my pelvic wall.


He said it was clear that I needed to be managed at an endometriosis centre with a urologist and bowel specialist present. So now I’m waiting for my appointment in a few weeks and I really can’t wait to get started with my treatment.




Thank you for sharing your story.

Remember, every one of us has a different story, and the more shared, the more we can learn. If you are interested in sharing your story, please contact me at shireen.emlwy@gmail.com.


S.
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