I went for my post op appointment today after having a diagnostic lap back in June which confirmed extensive endo on my bladder and bowel.
As far as treatment she was in favour of putting me on the pill and seeing how things go. I’m suffering with a lot of pain particularly on my bladder which occurs daily and I obviously have horrendous periods, I’m doubtful that the pill alone is going to help and I would like another child. She’s referring me to the specialist endo surgeon but she was sceptical that removing the endo would help and said he might possibly advise against it also.
Has anyone else been told similar?
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MrsC_0417
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Seems an odd thing; but I have noticed that some doctors will just put you on the pill as they seem to think it will help, plus it'll be cheaper for them and keep you coming back. An operation can be expensive so hospitals aren't always keen to carry them out.
Having said all of the above a specialist should always be interesting in sorting the problem at the root; hormones may help but it doesn't stop it growing it slows it down, so if it's bad now it could get worse. It also looks like you've made up your mind and would like the laparoscopy to remove the endo therefore hormones wouldn't be what you want.
Hormones, I think, are for those; that can manage their symptoms, waiting for a laparoscopy, want time to decide, or aren't at the point in their life to make a decision, happy with where they are. Ultimately endo will get worse as it needs oestrogen to grow, we are mammals doesn't mater what the gender we all produce oestrogen.
See what the endo specialist surgeon says as that's the one who could be operating on you and is a specialist. But do ask for excision of endo as that's the most effective treatment; it removes endo and surrounding tissue preventing regrowth, it is the most invasive but usually lasts longer. Other methods are laser (diathermy, heat) burns the top layers of endo leaving the below bits so regrowth happens. The last is ablation (sanding) this removes the top layers, it is the fastest of all the surgeries and recovery is quicker but regrowth is fast. The last two methods usually require hormones as an additional treatment, so if you don't want that; then deffo go for the excision.
My specialist when I went to first see him asked me what I wanted long term, I said to have reduce symptoms, he said by how much, I said even half would be great. He did the diagnostic lap and excision of possible endo with biopsies and hysteroscopy in-case there's anything else. There was lots of endo plus it had stuck my organs together; my specialist said the endo all over the place is why I had pain during my periods and the sticking stuff together is most likely why I had pain all the time. My endo was on my bladder, uterus, ureters and urethera, bowel and stuck them all together. He'd left a bit on my bowel as understandably it was a diagnostic with possible excision so he wasn't sure what he would find, he would prefer a bowel surgeon to work with him for that. We discussed that if I left it, it would either stay the same or get worse, if it gets worse it could perforate the bowel requiring more invasive bowel surgery, plus regrowth is generally quicker if active bits are left. I had my first op in Nov 2017, he estimated about 50% pain loss, follow up in March 2018, where we discussed bowel endo, pain was a lot better but still there in that particular area, so bowel op booked with colorectal specialist and him in July 2018, he estimated 90% pain loss compared to before the ops. I am 3 and a bit months post op, first few periods after op were awful (expected). It now feels like period pains which are manageable. I have a follow up in November 2018, hopefully it'll be good for a year or two. I'm not looking at any hormones. I am having physio for my lower back as I didn't realise due to the nature of the ops, they affect the core (as does endo itself) so the back has to compensate hence it's now stiff (this is apparently standard but no docs mention it). My lower back needs massage, manipulation and loosening this the physio guy thinks should help by back period pains too. I'm working on strengthening my core which should help with bloating - core muscles sit over the stomach so if they're strong bloating should be less. Plus strengthening core makes recovery quicker for next time - something I think we all should work on before the op.
I know it's long, but I felt some context to your concern may help! An idea of what happens
Thank you, that’s really useful to know. Giving me a better quality of life is my main goal, another child would be nice but Its not my priority as I am aware of how lucky I am to have the 2 I’ve got.
I’ve been put on the pill, coil and implant in the past and all they do is make me bleed constantly. I suspect it was also the cause of a chocolate cyst which put me in a&e! It’s for this reason I’m reluctant to go down this route again as I can’t see how this will help my endo!
I hope your plan to be pain free(ish!) for as long as possible works!
Hi there. I was also told similar. I had my lap in May with endo in pouch of Douglas and ovarian fossa area, I didn’t get any removed because it was so extensive. I seen the endo specialist in September, last month, and he basically advised me to stay on the pill too. He said ultimately having surgery was my choice, but having surgery isn’t going to guarantee you are going to be pain free after, and also there is the risk of further complications. He said if I was able to manage my symptoms stay on the pill, but if my symptoms were to get worse or I was having trouble with my fertility then that would be the best time for surgery.
Personally I think because I can manage my symptoms, and I know that the endo is always going to be with me, I don’t think there’s much point in going for surgery until I really need it as the pill is currently helping to manage my endo. Of course for you it could be completely different and your pain unbearable, maybe then you’d do it. Just remember it’s your choice and they should be telling you the benefits and risks of surgery.
There are risks that come with surgeries and I think those risks get higher the more you have. They include an increase in pain (something to do with nerves I think), scar tissue and anaesthetic risks.
My specialist is not my local hospital, I am under my local pain team who keep repeating the above to me.
I am awaiting my 6th op with the specialist team. They did explain that scar tissue rarely causes pain, if it is enough to cause pain then its worth removing to remove the pain. And surgery causes “other” scar tissue not “more”.
I think I have scar tissue on my bowel. I can’t go to the toilet despite taking bowel prep and i can’t eat properly. For me that’s worth removing, if it leaves “other” scar tissue somewhere else chances are it won’t be causing me issues to this extent.
I was told the same thing by my endometriosis specialist consultant.
That If I have an operation there's a higher chance that I'll be coming back in for more and more in the future. One it starts basically, it doesn't stop.
I'm currently on the marina coil and take tramadol for pain relief. The coil has stopped my periods (temporarily until I want to have kids - to give my ovaries a rest) and the tramadol has helped with excessive pain that I was experiencing.
I've had two operations thus far. The problem with this disease is that it will always come back. Even if you remove the womb in the future, that's not a guarantee that there won't be endometriosis in the future.
At the end of the day, it is your choice. You know your body better than anyone else. But there are pros and cons to having surgeries.
Thank you for your reply. would you recommend tramadol? I’m currently using paracetamol and codine. I only take the codine when the pain is unbearable but just lately it’s not really having much effect so I think it’s time to opt fo something else.
No. I wouldn't. Stay off it. It does help with my levels of pain. BUT there are some people that can get addicted to it - and it has some side effects, like any pain killer.
I'd only take it short term because it does help with the pain a lot - but I would make it clear to your go or consultant that you would like to know your other options, and i would probably go with the other.
Paracetamol won't help at all when it comes to endometriosis pain. Not in the slightest. Codine isn't the best either. I'd ask for something in between codine and tramadol and make sure to ask to be referred to your local pain team and they're the ones that would be most helpful - not your consultant. And just voice your worries to them. They'll advice you on what the best pain killer would be for your pain.
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