Monday, 19 November 2012

Back at'cha, sister

For today's post, I'm calling on all my endo sisters for a little advice. I usually just blurt out any questions I have on Twitter or Facebook, but recently I've stockpiled a few for this post. If you have experience with any of my questions below, please leave an answer in the comments section. I'd love to hear from you all!

:: For those of you with endometriosis on your bladder, do you have any problems with wetting yourself?

:: For those of you with endometriosis on your diaphragm, has your specialist ever told you they wouldn't remove it because it was too close to your heart?

:: Has anyone got endometriosis higher than their diaphragm?... How was this diagnosed and what symptoms did you have?

:: Have any of you got conditions other than endometriosis, that have shown up since diagnosis? I'm particularly interested in hearing from anyone with chronic fatigue as I'm showing all the symptoms of it and I know it's more prevalent in women with endometriosis.

:: Have you found any alternative medicines or products that have had a positive effect on your endometriosis?

:: Have any of you found a special diet has helped your pain and symptoms?

:: Have any of you found cutting dairy, wheat and/or gluten from your diets has actually helped?

:: Have any of you used a TENS machine for your pain - has it helped at all?

:: For those of you trying to conceive or those of you who have been lucky enough to have a baby, do you have any tips or things to try? Have you had to try IUI or IVF treatments? How long did you try for before starting IUI/IVF? How long did it take you to finally conceive? Did pregnancy reduce your pain during or afterwards regarding your endometriosis?

:: Do any of you regularly exercise? What do you find to be the most effective exercise types ie. yoga, pilates, running, swimming etc for your endometriosis? Have any of you needed to go through a type of rehabilitation plan for getting back in to exercise after a long period of sickness or an operation?
Thanks in advance ladies.



  1. I was diagnosed with stage iv endo at age 27 in 1996 after being married for only six weeks. I originally sought medical help for painful sex. I was told the endo was severe, all over my bladder and intestines, and no surgery would help because it was too dangerous and may destroy my organs. I was also diagnosed with irritable bowel and interstitial cystitis. I had wet my bed while sleeping all my life, and finally had a reason for never being night-time potty trained. Almost prevented my wedding, but hubby didn't care. Anyway, I was put on Elmiron for interstitial cystitis and the bedwetting disappeared. The Elmiron made my hair fall out, so after a year, I was switched to Detrol LA, and no bedwetting. I did a year of shots to put me in pseudo menopause, then several years of continuous birth control to make me in pseudo pregnancy all to control endo symptoms. Nothing worked for long. I am now 44 and I take no medication for anything anymore. I have heavy painful periods the same now as they were when I started at age 12 before anyone knew what endo was. It is a horrible way to live and I have yet to meet anyone in my real life that can even begin to comprehend the daily battle. I can only hope women today will not suffer as much as I have surviving this disease.

  2. I can't respond to most of your questions, but I can tell you that I exercise very regularly (about 4 times a week) I cycle, because it's comfortable and I do weights. I don't do much else, but it makes me feel great. I only don't go to the gym if I'm ill. I never push myself if I'm suffering from bad endo symptoms.

    As for diet, a full detox and strict diet don't suit my lifestyle at the moment, but I drink as little alcohol and caffeine as possible. I avoid red meat and eat as much fresh fruit and veg as I can manage. Where possible I eat brown rice/pasta etc. I can't say it helps me, as such, but I like the theory behind it and want to keep my body as healthy as possible since it's already fighting a big enough battle.

    We're trying to conceive but only for two cycles so far. I'm approaching it with no rules at all at this stage. Just because I have endometriosis doesn't mean I'm infertile so for now I choose to believe that all will be ok. Ask me again in a couple of months time and I may have a completely different answer.

    Unfortunately, I haven't been able to see a doctor surgically for 12 years (I have a long and complicated endo story - who doesn't, right?!) so I have no idea about the spread of endometriosis following my initial lap 12 years ago. I know it is on my fallopian tubes, but beyond that I have no idea. How do you know?

  3. I really, really struggle with chronic fatigue. It's bar far the worst thing I have to fight daily - and without being able to rest very much, it's really hard to pace my life and work so that I'm never doing too much and never have the opportunity to just collapse.

    I manage by pacing activity, never letting myself nap (even though I'm often desperate to sleep) and trying to go to bed at the same time each night - even if I struggle to fall asleep, lying still counts as rest.

    I have a light clock to help me wake in the mornings to wake more naturally and feel a bit more rested when less groggy when I wake up, but really there's no escaping the constant bone aching fatigue I feel. It's like I'm gathered up in a thick pelt of heavy around my shoulders.

    I am going to go back to the doctor soon to see if they have any advice about coping with fatigue, or if I need to be reviewed for developing another condition such as CFS/ME.

  4. I was diagnosed with Fibromyalgia last year. One of the symptoms is chronic fatigue.

    I find that using a TENS machine helps a lot with my endo pain. Try and find one that you can keep on all day, and not just for 20 minutes at a time. This is the one that I use.

  5. I struggle with fatigue, chronic pain. nerve pain around my shoulder and bad aching in my joints like a bad chest infection pain, that has been since my 1st op at the end of august since then i have been getting temple headaches and pains in my eyes. But through following the diet I can get out of bed and actually do things where as i was bed ridden before and also i go sometimes free of endo pain randomly sometimes in the day, but i have found it gives me more energy too.

    I Hate Endo!
    I try to walk and keep on my feet through-out the day even though it is hard some days to do that, Some days i just have to remain in bed and the only thing i can do to escape it sometimes is sleep.

    I try to ride out the pain even when it gets really bad, but i have to take them and i only take buscopan when i get bed ridden or in great pain, I don't want my body to get used to the pain killers, and saying that my body is very sensitive to drugs, i cannot have any morphine derivatives as it makes my pain much worse, my breathing gets very shallow and stops on it. I feel sick alot of the time when i have meds given to me to take. The only thing i find helps me feel really good is anit-biotics, but then they can cause really bad thrush too.

  6. Hello!

    1) I don't have endo on my bladder as far as I know, but I do on my ureter which makes sense as I suffered with terrible irritation for years & years! Before I was diagnosed with endo I was told I have an irritable bladder (doctors were so reluctant/crap about doing anything about it). I had a cystoscopy which showed nothing. In the end I did some research myself online & found out amitriptyline was successful in helping some people with bladder irritation. This was around 4 years ago and I've taken 10mg at night time ever since! It's only a small dose but it got my bladder under control, although I still suffered sometimes it was no where near as bad or as often. I never wet myself but I had terrible urgency / quite often bad frequency as well! It was a nightmare. When I'm on Zoladex I have zero irritation or problems at all with my bladder.

    2) I have IBS on top of the endo. I've always been told that it was the cause of my pain before endo diagnosis, but my Gynae believes most people with endo have some other kind of irritable/inflammatory type symptom/condition as well & symptoms match to me having IBS on top of the endo. Although it's worth nothing like my bladder, on Zoladex it's very rare I have any problems at all with my turmmy unless I eat things that upset me, which moves me on to my next point...

    3) I avoid wheat & dairy products. My stomach symptoms started as young as 12 and my mother arranged an intolerance test for me (although the validity of these is being questioned now). It came back to try & avoid these two food products, so for the most part I do. I occasionally have some chocolate or a biscuit or something, but all my main meals I'm very strict about. Undoubtedly it makes the shopping bill slightly higher, but I try and only have the basic 'special diet' bits and bobs, and eat mostly natural products that don't contain wheat/dairy, or normal stuff like rice cakes that happens to not contain it! I usually buy the 'free from' pitta breads, cereal bars & pasta. I really try and eat a healthy diet but I am prone to eating lots of sweeties- although sugar is meant to be terrible in general for the body as it causes lots of inflammation!

    4) I don't regularly exercise but I wish I did. I'm not sure if I don't have the energy or I'm just lazy. I'd be happy to go to bed at 8.30 pm every night and sleep through 8am! Have no idea if this is in anyway related to me health- I doubt it as my Mum likes lots of sleep too!


    1. Also added to the exercise point, I work 8am-6pm 4days a week so it's fitting it in as well- I should make time but I have no inclination after a long busy day at work! I'm always on my feet there so I'm sure it contributes a little bit x