Bladder endometriosis

So I've just had bad news that my endometriosis has returned, judging by the pain on the bladder again and possibly elsewhere in the abdomen. I had a urethral dilatation afte misdiagnosis last time, followed by laproscopy and diathermy to remove what they could, then 9 months of prostap injections to try and get rid of the patch on the bladder. I've been on the progesterone pill since then to try and stop it returning but this seems to have failed. Any advice from others who have had it on their bladder, your symptoms and how to cope with them, and also how to cope mentally. Last time I ended up with clinical depression and home treatment every other day from the mental health hospital, and I've reached the point where I dont know if I want to go through this all again

3 Replies

  • Hi ive just joined this site. I had my forth laporoscopy three months ago and was rushed into hospital last wednesday with chronic pain in my right abdoman. It appears endo has come back. Morphine injection was the only thing that worked followed by oral morphine. Ive been prescribed morphine tablets to take at end of period every month for four days after and im going to try the mini pill as i cant take combined pill as it effects my depression. Im sorry to hear yours has come back. I cant say whether morphine tablets will work for sure until i have next period in july but i can certainly let you know. They are very strong and do have anestetic effect. i did take when came out of hospital for couple of day but pain had already eased but the tablets have left me feeling very groggy and drousy. Im starting bereavement counselling next week and they said they can help me come to terms with what is going on with my health and the fact endo has returned and also the fact ive been told to have a baby as solution or hystrectomy neither am i in a position to have at this moment in time. Are you having counselling? Can i ask what pill you was on? What has your consultant suggested? Hope you can get the right treatment to help to ease with pain. If you havent already done so you can ask your gp to refer you to pain clinic at hospital to discuss pain relief as they can prescribe morphine. Good luck and let me know how you get on x

  • Hi, I didnt realise the pill could affect depression, thats something new I've learnt, im on the desogesterol pill. I went on it after the Prostap hoping it would work for treatment but the gynae didnt give much advice on long term treatment. The issues I'm having is its not just the pain, its like having some constant bladder infection symptoms with no infection. So pain needing to pee, struggling to pee at times its really bad, and pain/discomfort in the bladder up to an hour after urinating, frequent need to urination and some lack of control over bladder (leaking) plus severe pain if i walk more than like 20 metres.

    I've tried counselling before but it just didnt work for me, and i cant go back onto antidepressants due to severe bad side effects on my stomach from them (severe diarrhoea almost constantly).

    I can agree that neither pregnancy nor hysterectomy are suitable solutions =/ Both are a massive life changing decision. In all honesty, at this point, I would jump at an oopherectomy just to live a normal life again.

    My cousin also suffers from endo and was prescribed something like mefenamic acid combined with the implant and it seems to have worked for her specific symptoms.

  • Hi Nomibear,

    I have stage 4 endo, the endo is literally everywhere with large adhesions on and having penetrated into my bladder. I have the usual symptoms of pain urinating, frequency urinating, a strong urge to urinate where I literally force the urine out, trouble holding my pee so I've leaked a few times, lower back pain. I think the symptoms are worst during and just after my period. Some months they last for weeks and others not so long.

    I usually take painkillers when the pain is really bad just to make it more comfortable to pee. I just take ibuprofen and paracetamol. I have mefenemic acid at home which I made the doctors give me the last time I was being discharged from hospital following surgery but I try not to take it unless I'm in excruciating pain.

    Your diet can also irritate your bladder and make things worse. I now avoid red wine, citrus fruits, caffeine and acidic foods.

    I'm not sure how I cope mentally, I guess I just try and stay positive and keep an active fun filled life, if I stopped to think about it all it does overwhelm me and bring me down so I try not to give negative thoughts an entry to my mind. Having positive people around you helps me too.

    The last time I saw my consultant he took another urine sample and said he would test to see if I did have an underlying infection and if I did he would put me on a long course of antibiotics. I'm still waiting for results. Maybe you can request a thorough check of a urine sample to rule out the possibilities of an underlying infection.

    Stay positive my love, things can and will get better for you, it just may take more time than you'd like.

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