Undecided whether to have another surgery or try medical treatment

[KMBM]

Hello, I have recently been diagnosed with Mild Endometriosis after a laparoscopy in June to remove a cyst found Endo on my urethera. The surgeon that did the initial laparoscopy said she didn’t not want to attempt excision due to where it was and did not want to risk damaging my organs.

I saw a specialist yesterday who was very helpful and said she could remove it with hopefully no complications, which is what I was worried about. I asked whether we could try some other options first and what the risk with doing that instead of surgery was. She said there’s no evidence to suggest one way is better than the other.

I had a really bad experience with my surgery due to the nerves before and a longer recovery after than I was expecting. I am unsure which option to go down and wonder if anyone else has had a similar experience and what they decided to do?

My main symptoms are needing to wee frequently which drives me mad. I get horrendous periods and period pain and also severe bloating and back pain. Which I try manage with painkillers and heat therapy but find I am having to take tablets more days than not.

I am nervous with regards to where my endo is as I do not want to leave it and then it damage my bladder or kidneys. I had bloods done and they have all come back normal.

Thank you!! ☺️

[Lindle]

Is it your ureter (not urethra) and which side and was the cyst an endometriosis cyst (endometrioma)? Also did you hae a scan prior to the lap and which country in the UK are you as treatment pathways vary?

[KMBM in reply to Lindle]

Hi Lindle,

Yes it’s my ureter (sorry!) the cyst was on my right ovary but it wasn’t an endometriosis cyst. They did not mention endometriosis prior to the op and were mainly trying to remove the cyst to see if it would help with my periods. I had several scans prior to the op but nothing other than my cyst showed up. I have not had an MRI however. I am in England

[Jaye75]

i had endometriosis removed from my uterus ovaries and tubes last September and my periods are still the same heavy and painful, but if it is causing problems with yr bladder that means its affecting yr everday life so weigh up the pros and cons 1. It may stop the frequent toilet needs and not irrate you. 2. It may hit a nerve and cause more problems 3. Put up with the irritation and continue as u r. 4. Ask a lot of questions as to what risks there could be and percentage of these risks.

Its a tricky 1 but me personally wouldnt be able to put up with the irritation and i would chance it, although i have choosen to put up with the horrendous period pain and blood loss as i cant see any point of me getting another laparoscopy as the 1st time didnt help.

[Hidden in reply to Jaye75]

I had excision done and still had pain but I was also diagnosed with adenomyosis which is a huge pain generator, did they mention that at all? Although my first surgeon missed a huge amount of Endo. I e since had a 2nd opinion and more survey with a true specialist and am now pain free (for the first time in 20+ years!).

[Illustrator2022]

hi, I’m sorry you’ve got this decision to make! I’m in a really similar situation, i too had a cyst removed and during surgery they found endo around my ligaments, ovaries and bowl and somewhere with the word recto in it?! I can’t remember now. They didn’t treat the endo as they hadn’t asked for consent for that, only removing the cyst ( i didn’t know i had endo before the laparoscopy) I am in a dilemma about having the surgery again or not, I get awful rectal bleeding during my period and really bad pain which seems to be happening throughout my cycle and not just when I have my period now. I guess it’s weighing up the pros and cons, I totally understand thr nerves beforehand, I was soooooo anxious when I had the cyst removed and also took a bit longer to recover but I guess it’s thinking about having your symptoms relieved would make a big difference to your life? I don’t feel like I’m being any help but wanted you to know you’re not alone with this predicament xx

[Jh987]

Hi KMBM

if it's possible, I'd suggest trying some alternative non invasive therapy like accupuncture or homeopathy. The endometriosis may not be what's causing the pain. I've had about 5 laparoscopies over the years which has resulted in ACNES, where the nerves get stuck to adhesions on the abdominal wall as a result of surgery. The lasering off of the endo didn't sort out my abdominal pain, and I ended up on the mini pill for years. That I then was diagnosed with breast cancer may be as a result of the mini pill or may not, but it seems to me that all these surgical and chemical interventions have just caused other problems for me.

Hope that provides food for thought.

[hedgehog74]

Hello. Good advice given so far - it's a tricky decision. I had extensive endo surgery (including a bowel re-section) about 15 years ago which really helped me but my endo was severe. I've also been taking the pill continuously now for many years so I don't have periods. They were a nightmare before the surgey - pain, bloating, back ache, constipation, rectal bleeding. It could be worth you trying that - probably wouldn't help with needing to wee and doesn't suit everyone but not having periods is a godsend for me. I'm not completely pain/problem free but it's niggly rather than debilitating. Good luck with it all!

[Ntay101]

I had my first surgery in 2018 had 2 masses removed and a large amount of endometriosis tissue removed also but they didn’t touch certain parts as they didn’t want to damage organs, i was told I would get rebooked in with a specialist to remove more, the pain wasn’t as bad after surgery I did then get pregnant back to back so had no period for almost 4 years as soon as they came back so did the pain. I have spoke to many different specialists in the field and sounds like the more experienced and specialist can remove from the area with minimal risk. So do your research and request someone who specialises in endo removal. I was also told the longer you leave it the more it will spread which in my case it has but nhs waiting list not much I can do about that. If it is effecting your day to day life for me I would try anything. Wishing you the best of luck xx

[Artrockgirl]

I think ive got very similar symptoms as to where my cyst is and nerve pain running down my legs and back. I had ablation this year to other parts of my uterus but it has made zero difference to where my pelvic pain is. Often excruciating pain at times.

My current surgeon wanted to leave it as possibly too complicated. I requested 2nd opinion.

For me 8 codiene a day is not ideal. It makes me constipated. I think heat therapy is just placebo. I dont think its ideal leaving cysts as adhesions more likely. Just personal opionion, im not clinical.

I can let you know if i have any success woth other consultant monday xx

[alex_Louise]

I was really nervous before my laparoscopy too. For me personally I think the surgery really helped and I've had very few symptoms since. But I am also taking a contraceptive pill with 3 packs back to back, so vastly reducing the number of periods I have. This is maybe something you could try first if you're really unsure of the surgery? It's a really big decision and a very personal one too, don't rush into it before you feel ready

[Hidden]

Surgery is a big decision but so is locking in to meds long term when their side effects are considered. It’s worth noting that drugs may help with some symptoms for some time but they don’t halt disease progression unfortunately and the symptoms just come back when you stop. Injections for eg can cause some pretty hectic side effects for some (bone density loss is a big one) so it’s best to really research and weigh up your options.

I had Endo (deep infiltrating rector cervical, rectovaginal and uterosacral ligaments), adenomyosis, fibroids and adhesions causing issues. I traveled for expert care and am now pain free. The 24/7 pain from Endo is now gone. I also had a hyst (everything but ovaries, this cures adenomyosis, a hyst chemically or surgically isn’t a cure for Endo). My symptoms just got so much worse I needed help. I had tried all natural and medical methods (apart from injections like Zoladex etc, as I never responded well to hormone pills and the side effects for injections didn’t outweigh the short term benefits in my mind).

Excision by a true expert is so key and long term relief is achieved when you find the right specialist. It’s worth noting that Endo on the Ureter can eventually cause some pretty significant problems so if you have an excision specialist you trust, speak to them more about it. There is a lot of evidence of surgical intervention with a specialist (excision) being the best chance of long term relief. 🙏

[D25K]

Hi KMBM,

I had incredibly painful, lengthy and unpredictable periods in my teens until my GP prescribed the contraceptive pill when I was 18. We didn't know it was endo at the time. This helped a lot. When I stopped the pill in my 30s the period problems came back so I found a specialist and was diagnosed with endo - around ovaries, bladder and bowel with adhesions at various places in my pelvic area. The specialist offered lap surgery but also prescribed the pill back to back, no breaks. I didn't go for the surgery at the time as was told it was a pretty tricky job and would have risks. And luckily, taking the pill has completely calmed everything down. As I took packs back to back, I had no periods and I very rarely experienced any related pain. When I have examinations now I'm told all the endo is 'quiet' and not showing any signs of recent inflammation or activity. I know the pill isn't for everyone but it can really help. There are knock-on effects though, as for any decision. I am now 49 and have transitioned onto HRT as my body (especially my vaginal area) was showing signs of not getting enough estrogen (due to the synthetic nature of the estrogen in the pill)... So if you do take the pill or hormone therapy route, make sure you are getting the right amounts of estrogen, progesterone and testosterone for your whole body, not just to manage your periods.

Good luck KMBM x