Uterosacral ligament Endo

[chloe3011]

Bit of background on me, I have suffered severe pain for 11 years, no help from GP's as I'm sure you can understand. I had my first laparoscopy last November, they lasered deep endo on my right uterosacral ligament. In recent months the pain has returned, I had 4 months without a period until last week they returned with a vengeance.

I was encouraged to see my gynae that did the operation and he has recommended that I go to a BSGE clinic for further surgery. This has all come as a bit of a surprise to me, I thought that having one lap would help dramatically! He explained that he only lasered the endo but it actually needs to be cut out completely. My symptoms are pelvic pain, leg pain, IBS symptoms, sciatica and fatigue. Not an ideal combination

I was wondering if someone can tell me what to expect from the excision? Judging from my symptoms could I have endo on my bowels or sciatic nerve? I'm worried that because my first op wasn't done my a specialist that he may have missed more endo. Is it likely that after so many years I just have endo in one place?

I feel so isolated by this disease and angry that it's got to this point.

[Tryx]

I had Endo nodules removed from the uterosacral ligaments last June by excision and unfortunately I'm still suffering the same above symptoms which seemed to get worse after and I'm due another lap next week as they think it's came back. Endo on uterosacral ligaments needs to be cut out and any Endo really should be removed by excision rather than ablation which treats the surface only. Definitely get treated at a bsge centre as they are specialised in treating such cases of endo. Endo is a very isolating and frustrating illness and I wish you all the best in your treatment x

[chloe3011 in reply to Tryx]

Thanks for your comment, sorry you're still experiencing pain, it's hard to adjust to the fact this pain might be here to stay. I'm referred to Bristol southmead which I believe is a bsge so hopefully in safe hands now x

[katrina1234]

Hello. Reading your story I am wondering why the gynae dr lasered deep endo on your right uterosacral ligament as they are not suppose to touch it if deep endo as they are not trained to check for endo properly or remove it. You definitely need to see an endometriosis specialist in a BSGE centre. I would advise you to research centres near you and read up on the Specialists and reviews etc.

I am 3 days post op for my 7th Laparoscopy for Endo. I had a complete hysterectomy 17 months ago after General gynae failed to diagnose deep infiltrating endo. Unfortunate the BSGE centre I went to were awful and he messed up my Hysterectomy and failed to remove endo on my left uterosacral ligament. I have just had this cut out. I had nerve pain down left leg, pelvic pain and tiredness. Have been told the nerve pain is due to the hysterectomy. Great. Is there ever an end to this. This is a good place for support. Any questions please message me. X

[chloe3011 in reply to katrina1234]

Hi Katrina, thanks for your message. I really don't know why he lasered it seems like a waste of time as now I'm in the same situation as before. I have been referred to a specialist in Bristol which seems be bsge (phew) though I couldn't find reviews on the surgeon Sanjay. I feel so uneducated and because I've been treated so badly by GPs I get anxiety and struggle to ask questions when I see my gynae. Not ideal hey.

Sounds like you've been through such a rough time, I can't imagine how you must feel having 7 laps! REALLY hope you get relief once you have fully recovered , nerve pain is just awful. Thanks again

[Sez73]

Hi, having one lap can help dramatically but only if it tackles the endo correctly & unfortunately layering is not the recommended or best way to treat endometriosis. It's just removing the very top bit of an iceberg and ignoring everything that lies beneath....hence, endo will easily return and cause you the same symptoms and pain, often within a few months, as you seem to be finding.

Like you, mine lay undiagnosed for many years, finally sought a BSGE surgeons help (at the time is not heard of BSGE, I just did tons of research on the best surgeons for treating endo) I self referred to one in Yorkshire & had 2 stages of excision operations, the first to remove ovarian cysts/chocolate cysts and try to undo a lot of adhesions from my first diagnostic endo lap a year previously (by a general gynae=useless) , then the second op a radical excision of Endo which gave me a good year of pain relief until unfortunately 3 rounds of back to back ivf battered me and I think perhaps triggered the endo to re-emerge. I had severely affected uterosacral ligaments and both were removed completely in the second operation.

Certainly saw a difference in pain esp for the first 6 months but a couple of years later a lot of nerve pain has come back. Things also feel like they have sort of dropped slightly inside prob due to the ligament removal. So they can be removed if very badly damaged by endo, they often get quite a nodular feel to the ligaments with endo is deeply infiltrating on them. I also have adenomyosis so v hard to say exactly what causes which specific pain (not frustrating at all!!!)😫

Defo worth going to a specialist though. I had diagnostic surgery by a general gynae surgeon who made my situation a great deal worse. Endometriosis returned with a vengeance 6 months after first lap. It also returned in a lot more places so wasn't confined to one spot unfortunately. You definitely need a specialist to correctly excise your endo, lasering is not the answer unfortunately.

All the very best, I know how awful it can get and send us big hug x