please forgive me if I make any mistakes here, I've never posted on this or any other forum before, but I'm hoping someone can help with advice.
I have endometriosis. I was diagnosed 8 years ago, then told a year later that it was a mistake (because it didn't show up on an ultrasound scan). After having terrible bladder problems for 18 months and feeling really poorly my GP sent me for a bladder scan in Autumn 2015. It showed that my bladder was incredibly small and I was told it was probably due to the 10cm cyst on my ovary. Anyway to cut a long story short, it was an endometrioma. My Dr then said that the constant pelvic pain that I'd had for 8 years since my last ectopic pregnancy was probably caused by the endo (previously they'd said it was scar tissue pain and that the ill feeling was anaemia) and that it was most likely the endo that had caused me to have 3 ectopic pregnancies in 10 years in the first place too (fortunately I also have 2 very healthy children). Within a month of being diagnosed the pain in my pelvis and bladder was unbearable and the tiredness and exhaustion had increased. I was in hospital over christmas and then back in January to have the endometrioma removed as an emergency. The hospital left the endometriosis and didn't explore to see where else it might be. I was told that I'd go back in 6 weeks to start hormone therapy. My appointment came through for Mid May (over 4 months not 6 weeks - because they forgot me until I called for the second time to chase the appointment) but by early April the pain was so bad again and getting worse all the time that I paid to see an Endo specialist privately. He explained everything carefully and said that I could have an op to get rid of the endo and explore my bowel to see if it was effected and my bladder - to see what the extent of it was in my bladder (he was pretty sure it was there) and re-inflate my bladder, but warned that the waiting list was long. Alternatively I could try hormone therapy and HRT first which would alter the course of treatment. If it worked then they'd just take out my remaining ovary to mimic the effect of the hormone therapy later this year. He did warn me that weeks 2 and 3 the pain would almost definately be worse so I was expecting that and understood exactly why. I work a lot with the medical profession so ask a lot of questions and do understand most of what I'm told. He asked my GP to begin my treatment and advised me to go to my follow up hospital appointment as planned and asked to be referred to him if I decided to have the op. However I really wasn't expecting to feel like I'm feeling now. I'm on week 2 and I feel more awful than I can explain. Every bone and muscle in my body hurts 24 hours a day. I've got worse pain than usual (as I expected) and a feeling like a trapped nerve up high in my urethra which is agony. Sleeping is impossible unless I take diazepam, which I can't do on the 5 nights a week that my children are with me. Pain killers aren't working at all. I can barely function. Unfortunately I have a very high energy lifestyle. I run my own business with a team of 40. We work all over the uk and in Europe and I'm also a single mum with 2 children. Since Christmas I've limited the amount of travelling I do, but still do have to travel several times a month and work long hard days from home. Feeling as if I can't do anything at all - as I do now - just isn't an option for me. I'm totally financially responsible for my children, my mortgage, bills etc. and for the business - we get no financial help from their Dad at all. Not working is simply not an option for me. If I don't work I will lose my house and my business.
I've got my hospital appointment (the one I've waited fro since the beginning of January) on Tuesday as it's just been brought forward a week. I don't know what to do. It's been almost impossible to get to see them and I know I need to tell them what I want to do or else they'll just bulldoze me as they did when I was an inpatient in January. They had wanted to start the hormone therapy the day of my op without discussing it with me until I stopped them.
I had intended to ask them to refer me to the endo specialist (which they usually do as standard) and to be put on his waiting list for the op that he advised me to have, but to continue with prostap and HRT until the time came. That way I thought if it really began to work I could ask them to change the op to an ovary removal nearer the time.
However, If I'm going to feel this ill - even if the pain goes - I just can't do it. For those of you on Prostap and HRT who have had a reduction in pain - has the ill feeling that you got with prop gone too or have you decided to live with the joint/muscle pain/ exhaustion/ill feeling etc. in return for a decrease in endo pain?
Sorry for the long post. My friends say that I've got baby head without the baby since I've been on this stuff. Thanks in advance
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mollymm
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Hi welcome to the group. It sounds like you have severe endo. That being the case the prostap is unlikely to help a great deal, and as you finding out the side affects can be horrible. Also even if it does help removing the remaining ovary will not solve the problem . You need all endo thourghly excised by a specialist at a BSGE centre. Severe endo produces its own supply of oestrogen so is self supporting.
Search for a lady called Lindle on here and have a look at her posts on treatment pathways and nhs guidelines etc. Good luck.
The consultant I saw privately last month heads up a BSGE centre, but he didn't do the surgery so is only guessing at the extent of it. He gave me the choice but thought that the therapy would be worth trying given that I'd have to wait months for surgery. If this isn't going to help I need to come off it - at the moment I've got the worst of both worlds. I might call him on Monday and see if I can speak to him ahead of seeing the consultant at the local hospital on Tuesday. I have no faith in them at all. He wants them to refer me to him but they move soooo slowly. Have a lovely evening and thanks again
I have stage 4 endo and Prostap is the only thing that makes me feel well while I'm on it. It's amazing for me, it's like my endo is turned off while I'm on it. It's only a shame it's not a long term treatment. X
Hi there. Welcome to the group. Prior to going on Prostrap 8 months ago I was like yourself in chronic pain daily the second my feet hit the floor in the morning. I could barely function. I work full time. Commute. Have a 4 year old daughter. Hubbie on shifts. Like yourself not working wasn't an option and I couldn't continue as I was. I was referred to a specialist mentral disorder clinic and things then finally started to take a turn for the better. I began taking prostrap and the pain relief was instant. I've had no HRT. Was advised against it as it would basically counteract the injection and wouldn't work. It's our hormones that cause the problem he told me. Aside from a few hot flushes I've felt like a new woman. I cannot recommend prostrap enough but everyone has different side effects. I just thought it couldn't be any worse that the chronic pain I suffered daily so I thought it was worth a try. Glad I did! Here if you wanna chat or ask any questions x
Thanks so much for your reply Bexstar. It sounds as if you're in a similar position to me. It's frustrating when friends say that you do too much or that you should have time off work when you can't. I'm guessing you may have experienced that too. It's not as if I'm deliberately hurting myself, we just have to get on with it. I'm really glad you finally got it sorted!! The pain hasn't gone, at the moment it's worse (just going into week 3) but I was told to expect that - so that's ok. It's the new joint and muscle pain that I'm really struggling with and my energy is even lower. My body keeps locking when I sit or stand. I was tired all the time before and not able to work out as I usually do and did have muscle aches a lot. Maybe the prostap has intensified that initially first too - maybe that's what the joint and muscle pain is. I hadn't thought of that. If so then maybe when my body gets used to the prostap that'll go along with the pain. I think I'll ask them to put me on the list for the op tomorrow but also keep going for another month and see what happens. I'd love it if the prostap worked. The endo specialist has said that if it does he'll remove my remaining ovary and that will give me the same results as the prostap - which'd be a lot nicer than the other op they're considering. Fingers crossed. and thanks again for your help
I had the same frustration when I was in pain before prostrap. People who don't have the condition just don't get it! How many prostrap injections are you in to now? It will take about 3 to calm everything down. My consultant said it might take longer because your body is in a real war zone internally and takes time to heal......I did have muscle and hip pain continue for a bit but it's because your body is still fighting the injection, and that's normal apparently. xx
Also as I felt like a new woman within 6 months I decided to start going to a few gym classes. If you do eventually ensure you steer clear of any high intensity classes eg circuits as I did one and it really upset my endo causing it to take 2 weeks to calm back down x
That's massively helpful information. It's the joint and muscle pain that's been worrying me. I usually do a lot of high intensity exercise 2-4 times per week. Since October I've hardly done anything. Last week I did a pilates type programme (first time I'd done anything in a mont) but it was high intensity - a real fast paced burner - based on pilates and not what I'd expected. I wonder if that made things worse. I've done nothing since and now even walking into a shop feels like I'm climbing a mountain. When I do feel up to the exercise I'll steer clear of my usual stuff. Thank you sooo much for your help!
You need to give your body time to heal properly before you go doing any exercise really or it'll battle more! Give it another 12 weeks rest and you'll hopefully feel a difference. Do some dance based classes and take it steady when you do....I'm itching to get back to teaching Zumba but too many other things going on at present to allow it. Here any time you wanna chat x
It is a side effect of Prostap to experience a flare up of symptoms initially so, if you can, maybe try to ride it out. I'm in my second month of injections and for the first six weeks or so I felt like my symptoms had got worse but now I feel a lot better and very little pain (improving all the time). X
Thanks Janine - I was expecting the pelvic pain to get worse, just not these new joint pains and the increased muscle pain and tiredness. Maybe it's just an initial flare-up. Thanks for your help and Good luck!
It's not great but it gets better. I found my stamina improved and tiredness decreased, pain decreased as well. I judged it by what I could achieve, work wise and socially. I would stick with it and keep hrt.
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