Thursday, 13 September 2012

30 things about living with endometriosis you may not know.

Image courtesy of https://www.behance.net/gallery/13341953/Ajandk-Terminal-AT-Xmas-2013

I saw this post on another endometriosis blog, The Melissa Monologues (also linked in the 'endometriosis library'). Since none of us are the same and we have all had very different experiences, I thought I'd give it a whirl and complete it too. 

1. The illness I live with is:
Endometriosis. You can read more about the disease in the 'Endo-What!?' tab at the top of the page... And on the rest of my blog!

2. I was diagnosed with it in the year:
I started having real problems with it in 2004 and after my doctor ran some tests, he sent me for a laparoscopy and my endometriosis was discovered in 2005.

3. But had symptoms since:
1995 - when my periods first started. They were always very heavy and painful but I thought this was normal.

 
4. The biggest adjustment I've had to make is:
Learning to cope with my new life - OR lack of life! Since February, my life has altered completely. I no longer work, I don't get out to see friends, I don't drive. I don't really do much at all.


5. Most people assume:
That endometriosis is just period pains. Even when I've fully explained it to people they just do not understand it. But, to be fair, unless you see me at my worst times, I don't think you could ever fully grasp what this disease can actually do to a person. Calling in sick to work was always the worst thing, people would just think you are making it up and that all women have periods so it can't be as bad as I'm making it out to be.


6. The hardest part about mornings are:
Trying to make that first move and get out of bed. And then it's trying to go to the toilet. Mornings are one of the most painful times of the day because I've been still all night and my bladder is full (which means it presses on everything) and also all my medication has worn off. I always wake up exhausted too - no matter how much sleep I have gotten. It takes me a good half an hour to get out of bed each day!

7. My favourite medical TV show is:

I don't really watch medical TV shows. I used to enjoy 'One Born Every Minute' which is a UK reality type show based on a maternity ward, showing couples getting ready to give birth. It upsets me too much to watch it now though.

8. A gadget I couldn't live without is:
My iPhone. It means I can get online anywhere and keep in contact with the outside world.

9. The hardest part about nights are:
Trying to get to sleep. I'm generally OK if the boy is here, but some nights I cannot sleep at all no matter how exhausted I am. But when you can't sleep, it just makes the next day so much more difficult.

10. Each day I take 19 pills and vitamins:
19 is a regular day for me. It includes 2 150mg Tramquel (Tramadol), 3 250mg Naproxen, 8 500mg Paracetamol, 2 600mg Calcium & Vitamin D3, 2 500mg Evening Primrose Oil, 1 A-Z Multi-Vitamin with Minerals and 1 5000mg Cranberry tablet. On the days where the pain is too much for me, I also take 6 30mg Nefopam tablets a day... I basically rattle when I walk!


11. Regarding alternative treatment I:
Would love to try it. I've heard good things about acupuncture but I really couldn't think of anything worse than having a load of needles stuck in to my tummy right now! But definitely in the future. I guess nutrition is an alternative treatment and I've recently cut out dairy from my diet. I will also be cutting out wheat and gluten over the next 3 months and then slowly adding it back in to see if any of those effect my endometriosis.

12. If I had to choose between an invisible or visible illness I would choose:
This is a really hard question to answer. It's difficult to make people understand the disease because you cannot see it, but then at least some days I think I look OK. If I had to put up with this disease and look terrible at the same time I definitely wouldn't cope. Sometimes putting on some make up and a pretty dress and doing my hair nice is all I have!


13. Regarding working and career:
Work was always difficult from before I was diagnosed. I would take regular time off each month and this gradually got worse. I started my last job (as a Personal Assistant) in 2009 and didn't take any time off for my endometriosis because I had my coil in for the most part. But in February this year, my endometriosis flared up (mainly due to the stress I was under at the time) and I haven't been able to work since. I was made redundant in May so now I claim ESA benefits to pay the bills. I am desperate to get back to work but having this disease does really restrict your options.

14. People would be surprised to know:
How much endometriosis affects your entire life. It affects your body, your work, your relationships, your friendships, your mobility, your independence, your self confidence... Everything. Right down to your money situation. I don't get any time off from endometriosis. It is my entire life. From when I wake up, to going to the toilet, to getting ready, doing daily chores, getting around, to trying to sleep at night. It's always there, and that's very hard to deal with.

15. The hardest thing I've had to accept about my new reality has been:
That I may not be able to have children. I knew this from before I was diagnosed. And it's there, everyday, no longer in the back of my mind. It's there at the front, and every month, every period, every time you see a baby, it's a reminder. I still haven't accepted this. It's what I believe to be true, I don't think I can have children, but it's not something I've come to terms with. I don't think I will ever be able to come to terms with it.

16. Something I never thought I could do with my illness that I did was:
Find such an excellent support system online. I would have loved to have gone to a support group but there are none near to where I live. I joined Twitter a few months ago, purely for the blog and found so many wonderful women on there who all understood what I was trying to cope with. I know now, that they are always there should I need any advice, or a cyber shoulder to cry on. I would urge anyone going through this to get online and find someone to talk to.


17. The commercials about my illness:
What commercials!? There is barely any information out there for women in my situation. There are special charities set up, and Facebook groups etc, but we're lucky if we get a small article in a magazine or newspaper. The one time I did see it talked about on TV was on Channel 4's Embarrassing Bodies (a UK show), where a girl went in for surgery and was miraculously cured of the disease never to have any problems again. There were a lot of angry women in the UK that night and I believe Channel 4 received a lot of angry emails regarding their portrayal of the disease. If we had commercials on TV and information in magazines, if more people knew what this disease was, we wouldn't have as many problems with people misunderstanding the disease.

18. Something I really miss doing since I was diagnosed:
Well, I was diagnosed in 2005 and it's never really stopped me doing anything until this year. Obviously, it always depended on whether I was in pain from a period or not but apart from that, life was pretty normal. Now, since my flare up, I don't really have any sort of life. I desperately miss being able to work and earn money, being able to drive and get about easily, and I miss being able to go out and drink and dance till all hours. I miss my life. Oh, and normal, pain free sex. I miss that. I really, really miss that!

19. It was really hard to have to give up:
Everything. I'm 28 and I have given up my life this year. When I should be in my prime, working hard and going out with friends, I don't have that anymore.


20. A new hobby I have taken up since my diagnosis is:
I started my blog last year but didn't really start writing on here until July this year. It's really helped to keep me busy and keep my brain active and I've had great feedback from people who have taken the time to read it.

21. If I could have one day of feeling normal I would:
Have a full day of living! I would go out shopping and then out in the evening for a meal and cocktails and dancing with all my friends. That's my plan for when I'm better. But the more I sit here, the less I see me getting past this. 


22. My illness has taught me:
A lot about my body. How it works, how things can effect it. It's taught me not to trust everyone, not all of your friends will be there for you at your worst times. It's taught me to cherish those who do stick by me. To work hard at keeping relationships in a good working order - it's not just me that has to go through the difficulty of the disease. To make the most of those moments when you can do things and to see the importance in the smaller things, the things you took for granted when you could do them whenever you wanted. It's only when you haven't got these things, can't do them etc that you realise how much they actually meant.

23. Want to know a secret? One thing that gets under my skin is:
People who don't even care enough to ask how I am. I make my life rather public with this blog, but it's common courtesy to enquire. And I so miss people talking to me, instead of ignoring me like they do now. It's very difficult to cope with.


24. But I love it when people say:
People don't necessarily have to say anything, but to just check in and see how I am, to just somehow let me know they sympathise in some way with what is happening, it means a lot. People taking a few minutes out of their day to talk to me means more than you could ever know, whether it be friends, family or strangers in a park.

25. My favourite motto, scripture, quote that gets me through the tough times is:
Something I had tattooed on me not long ago. It is an E E Cummings quote: "To destroy is always the first step in any creation". It reminds me to keep going. That something good can come of bad things... I'm just waiting for the good to come along still.


26. When someone is diagnosed I'd like to tell them:
To not be scared by the information you do find out about endometriosis. The disease isn't the same for everyone and sometimes it can be scary hearing things that others are going through. Also, you're not alone. You may feel it, but there are millions of women in this world who know exactly how you feel. Get online, talk to people you work with and your friends, find out if there is a support group near to where you live. Unless you have a support network around you, it's very difficult to cope sometimes.

27. Something that has surprised me about living with illness is:
Everything! From the lack of knowledge people have, to the lack of understanding people will give you. The disease itself is a surprise. No publication, doctor or book can ever explain the amount of pain you can go through with this disease. I wish sometimes, people could just feel it for a second, just to know how it feels every moment of my life - but then, I wouldn't wish this on my worst enemy.

28. The nicest thing someone did for me when I wasn't feeling well was:
Luckily, I have some wonderful people around me that look after me and help me when I am at my worst. I wouldn't be able to cope without my parents, the boy or my friends. They have all done plenty of lovely things for me and I cannot thank them enough. But, apart from that, it's just been people asking how I am. Sometimes, you just need someone to show an ounce of compassion.


29. I'm involved in Endometriosis awareness month because:
Endometriosis needs awareness! Not enough people know what this disease is or how it can affect someones life. Women need to know what to look out for and to know that being in ridiculous pain from a period isn't normal. My own personal goal is to just get as many people reading the word endometriosis as possible. Even if they don't read any further, they will have read that word and seen that this thing exists.


30. The fact that you read this makes me feel:

So incredibly happy that there are people who care about what is happening to me and millions of other women across the world. I really do appreciate it.

S.

16 comments:

  1. Wow, it's crazy how similar your story is to mine! I'm 28 too and have been diagnosed with both endometriosis and PCOS since I was 21, but I've had symptoms for what seems like forever since my period started when I was in 5th grade. My pain has increased a great deal over the last year or so, my doctor has suggested putting me into a chemically induced menopause and doing a second surgery, but I'm scared to do that.
    I too hate when people minimize the amount of pain endometriosis causes, it's not just period cramps for goodness sake! I would be practically giddy if that was merely the only pain I endured.
    Thanks for sharing your story; it's made me feel a little less alone.

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    1. Thank you for your comment - it's makes me see that I'm not alone in it either! Treatments and surgery can be scary but if they make you feel any better than you are feeling now then it's well worth it. My only advice is to try, try, try until you cannot try any more. I know how bad endometriosis is so cannot imagine how bad you must feel with PCOS also! xx

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  2. Hi, I suffer with Endo very very badly. I am on the Old System of Benefits and am about to be reaccessed by the New System. I am now 54yrs old. 6 operations, 1 was life saving. My pain is on and off through the day. Sometimes the pain killers don't work. Husband left me. Tried my hardest to be the best wife. Can't take steriods anymore as they damaged my Pancreas, Digestive and food enyme problems, rigid bowel, inflamation in joints. Taken off my only drug that at least kept me on my feet and able to join in sometimes with family comitments Zoladex. ... but they said I had far exceed the time on that drug and it was affecting my Heart and Bones. Well gone through the Menopause. I was told it would get better! BUT NOT A SIGN THAT THIS VERY PAINFUL AND SELF-ESTEEM BREAKING DISEASE IS STOPPING AT ALL. It in my whole body, even my lungs play up.................. But I have a sense of Humour, a little soldier and have a attractive face and on a good day look younger than my age. Joy

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    1. I read your comment and felt so sad because I can relate in so many ways but your final comment gave me such hope. It's so difficult getting through the hardships of this disease and finding the positives but you have things there to be so happy about. And hey, if we can't have a good old laugh about all our problems (even if it's full of despair!) then what do we have!? Thanks for commenting. It's always nice to hear from women dealing with the same issues. xx

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  3. The first thing we need to do is get endometriosis labeled as a "disability". Women who suffer with this disease need all the support we can get and that starts with public awareness.

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    1. I couldn't agree with you more!

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  4. I have had 5 surgery from endo. In 4 years . I have lost 4 jobs in 2 years ..but still they tell me endo isn't a disease I can get social security for ..why don't they see ..it's the endo. the pelvic pain .the Ibs .the overactive bladder.the back pain ..the depression..the hurt .the doctor appointments ..the pain ..the pain it's self should be a enough...the hysterectomy that didn't work....come on we need to change that endo isn't even recognized through Social Security...

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  5. Thank you. I needed to read this as I am at my breaking point. I feel like giving up and I'm in a hard place right now, where even my mother thinks I'm crazy and lying. I appreciate people like you who support other women in such a hard time in their life with this crappy disease that makes me feel like it's taking over my body. Thank you so much.

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  6. I am 25 I have been through 4 surgeries they removed both my fallopian tubes I been going through this for 4 year out of the situation I do have 1 child out of all this I just was diagnosed a week ago I'm just glad I'm not alone .

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  7. Thank you. I had not known so many suffered Endo, and truly did feel alone. I can't tell you enough how grateful I am to you today. Everything you wrote, especially about how it affects your life 24/7 and working full-time in a career I love, yet have had to call off due to Endo and they don't understand, but rather discount me as a woman who has bad periods - and i was literally told by my Male boss and Female Supervisor, that I needed to toughen up & just come in to work?! I tried so desperately to explain how many days I do this all the time in severe pain, but roughly 1 day a month, sometimes 2, I can't stand due to the pain.They require me to see a dr every time i call out...they don't realize my going to the dr's office, waiting for a dr, only to have them sympathize so much with my situation, and write me a note again...only to say they wish my Employer would recognize this disease. I am online today because I want to fight back, I don't make this up, this is my life. I have been told by my Gyno to have a Hysterectomy and I don't want that - I am not ready for that. Plus even if i did opt for this surgery, i would be out of work for so long, that my Short Term Disability would only pay a very small portion of my salary and I would lose my home. I am praying there is an option to put in place a policy of some sort with my Employer with maybe a Dr's help to let them know about my Diagnosis and that my only taking 1 to 2 days off a month is a miracle and ought to not put me in comparison to others "toughing" it out and getting to work despite their illness. Anyways, i appreciate you - I truly do as you have empowered me to know I am not alone, I am not crazy, and, yes, i wish i could have pain free sex...boy do i miss that....so I have stopped dating all together...just a beautiful, full of life, woman who is all alone and just trying to get through each day!

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  8. i am 35, I have had 14 surgeries total. 6-9 laporoscopies, endometrial ablation, they took my gallbladder, and appendix just because!! lol..ive had my nerves burned off,my uterus, tubes, and cervix also recently removed!! now 2 years to the date I am back in pain! ive seen almost every un educated doctor in my county and another county!! alls I need is one surgeon that knows what they are doing!! ive done a lot of research on this disease..alot..im tired of being cut open..the surgeries cause adhesions which makes the endo worse!! if anyone needs to talk you can email me..missnicolel@aol.com

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    1. Hello, good to read all of these reviews, I have just been diagnosed in March 2016 after a painful ER visit which which lead to surgery the next day removing only two of the 3 endo cyst leaving one in my abdominal wall so here I am now with more pain then ever before. Although 3yrs prior I had a partial hysterectomy leaving only my ovaries. I was never informed of my endo during that time, I only had the surgery because of my painful periods, however after reading my medical report 3yrs later I learned I had severe endo on my cervix, fallopion tubes, and uterus. However my GYN NEVER shared that info with me when I advised him of the surgery he was extremely shocked because he stated he knew I didn't have a uterus being that he was the one that removed it. Which is what made me log into my health chart to review my medical history from when he completed my partial Hysterectomy. I just feel so cheated because if he would have just told me ahead of time we could have treated this issue 3yrs ago and maybe I would not be suffering so much now. Since then I have had over 20 CT scans 6 MRI, removal of my gallbladder, 1colonoscopy, and 4 endoscopes so many other medical test its unbelievable I have even traveled back to my hometown Detroit, MI to get a 2nd opinion and no one suggested Endo even though I constantly complained of the pain under my navel same location they removed the two cyst from but for over 3yrs I was told there was nothing wrong it was just severe scar tissue. Instead I was diagnosed with Gastroparesis, IBS, Chronic Vomiting Syndrome and Anxiety Issues. I think had I been properly diagnosed none of these other chronic issues would have occurred. So now here I am today 07/08/16 in unbelievable pain, feels like I have been on my menstrual for the past three weeks. Of course my partial hysterectomy was over 3yrs ago so feeling cramps again is crazy. Makes me feel like a teenager all over again at 34. I haven't worked since May 15th and I went from no ER visits since Dec.2015 and now I am at the ER at least once a week since May and I hate it so much. The pain is so intense I feel pathetic at times because I have to stay curled up in my bed or on the couch in pain. With 3 kids, a husband, and a dog I have no time for this pain and feeling helpless but what am I suppose to do? Pain meds, natural remedies, specialty teas, spa treatments, prayer, breathing treatments I have tried so much and sometimes I have a good days and other days I am miserable. I keep being told its in my head, yet they put on Birth Control, and suggested Lupron at this point I want the laporoscopy done but no one seems to want to do the procedure instead they want me on meds all day. I am in Raleigh, NC still looking for a resolution. Any suggestions would be great

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  9. I really enjoyed reading this... I find it hard to relate to people often but this hit me in a good way. Thank you for sharing your life. It's nice to know someone else out there deals with the same problems. Good Luck!

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  10. Ugh I just love this. I've been having such a hard time with my co-workers understanding why I'm absent. I feel like a fraud some times because of my illness, and I shouldnt. I can't help what my body feels. I'm a hair dresser and it's really hard to hide the fact that I'm in a lot of pain. The part where you answered if you were to have a visible illness over this would you, really struck me because it's so true that people honestly look at me and my hair done up, make up done up and think that I must be fine! Like seriously it's so annoying. Sending all my love to you hun. It's tough!

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  11. It is so great to actually get a blog for endo and pcos sufferers !! I am also a 28 yr old been diagnosed 2 yrs ago and after my procedure im in excruciating pain more than ever before especially lower back ,abdominal till in my left leg are there any tips/remedies out there u ladies are using to cope with this cant wait to hear from u all much love and all the best of health to all endo fighters xx

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