Ovarian Cystectomy

Hi, how are you? I'm 40 years old and I have an ovarian cyst that doctors believe to be an endometrioma (99%) for two years now. I have no symptoms whatsoever. Doctors want to perform an ovarian cystectomy due to the danger of torsion or cancer ( my mum had breast cancer). Since I'm not in pain, I'm not 100% sure to go forward with surgery. I have regular periods, just a slight discomfort, no pelvic pain, nothing. I'm not on the pill, never was. My main concern is that the surgery may cause adhesions leading to chronic pain, leading to further surgery and more adhesions. The doctors only see the disease, they don't think about your life after surgery, they just want to remove the cyst. What about my quality of life? Well, has anyone been in the same situation? Asymptomatic endometriosis? Did you go forward with surgery? How was life after (not talking about the two weeks following laparoscopy, but months after)?

(I had serious pelvic pain, urological issues and health issues in general after the 1st dose of COVID vaccine and nobody could find out what it was. The system failed me, nobody helped me. I went to a TCM doctor and I'm fine now. Very distrustful of doctors though.)

[EndoSuckss]

From experience, I'd recommend having it removed. Your recovery period after surgery should be relatively short.

I had an endometrioma a few years back, and it burst about 2 weeks before surgery. It was agony.

Plus, when it is removed more endo may be found. If not excised, it could continue to spread. With endo, I think its better to know what you're dealing with.

However, it is of course your choice. Good luck

[My_adventures]

So my situation is different but, I agree with endosuckss comment, I am waiting for surgery for a 22cm mass and part of one of my cysts burst in January, its the worst pain I've ever felt.

Im also in forties, I do have pelvic pain around my periods and ovulation. The cyst is attached to my bowel with adhesions on my bowel too.

I have been told twice they can't rule out cancer, and only following the surgery will they biopsy.

I would follow your gut feeling. And try and get as much information from them as you can before going in.

I definitely agree with the fact they only see the disease. Its hard to make long term decsions when we only have limited knowledge.

Take care and good luck

[Helena45]

With the endometriosis and cyst being asymptomatic, what led to the investigations for it to be discovered and brought it to the doctors attention. Was it prophylatic screening due to a family history of cancer?I lost my mother to periotoneal cancer of ovarian origin and although she was BRCA gene negative I had MRI due to endometriosis and endometrioma but have been advised by my BSGE consultant that my risk of cancer remains minimal and he is reluctant to operate if I remain asymptomatic post menopause. I am aware that there are other genetic markers that can increase cancer risk but for me risks of surgery outweigh benefits at present.

[Hidden in reply to Helena45]

It was in a routine ultrasound. I do a routine ultrasound once a year with my OBGYN in the private sector. My CA 125 is normal, as well as CA 19.9 and CEA. My mother had breast cancer after menopause and HRT. No other cases in the family (aunt or grandma). I had an MRI and it only showed the endometrioma or they weren't able to see anything else.

[tazgirl]

Very interested in this also. I had an endometrioma found in sept last year which grew in size over the following few months. An mri showed some other endometriotic plaques also. I’m 43 and can’t say I have had many problems (period pain but very regular and nothing horrific) until the last 6 months. I now have discomfort and days of worse pain around my period but nothing I can’t generally manage with otc pain relief and hot water bottles. I’m waiting to see a consultant. I don’t know if I should push for removal of the cyst at least as am concerned about cancer risk as it grew large quite quickly. My biggest concern also is to end up living a life of chronic pain and making the situation worse. There are no excision specialists in my country so not as if there is a possibility of removing the plaques properly. Can I ask how large your cyst is and has the size been stable?

[Hidden]

Stable for the past year, 3 cm, give or take.

[Periodical]

Hello 👋 Your situation sounds very similar to mine & Im 3 weeks post laparoscopic cystectomy. I’m 39 & had had a 3-4cm ovarian cyst for a year & a half that hadn’t changed in size. I’ve never had much period pain at all but started to notice slight discomfort wearing a cup & had 2 crampy periods in the space of 6 months where I had to take paracetamol. Pain gone in 30 mins on both occasions but this was unusual for me & so got it checked out. Ultrasound & CT scan showed an endometrioma. And my ca125 was elevated. Also had an MRI that showed no other endometriosis or problems. Went ahead with the lap privately & was quite conflicted as pre surgery had been feeling really well - fitter than ever in my life with daily yoga & running 4 times a week. Dr removed the cyst & didn’t find much else. Surgery much better than I expected & recovery too. All in all I’m pleased I had it done so far as would rather know what was going on inside. Have had the coil fitted to hopefully prevent further cysts. Good luck with your decision & feel free to message if you have any questions.

[Hidden in reply to Periodical]

How are you feeling?

[Periodical in reply to Hidden]

Really very well - Thanks for asking. Scars healing amazingly, swelling down, back to driving & working & feeling normal. I’m holding off running til next week but have been walking 5k daily. Haven’t yet had a period & so no idea how that will go. Apparently the first one post op can be painful. Official diagnosis on my report was endo but I’m still waiting on biopsy results. The whole thing was much better than I expected, just difficult to allow for the 2-4 weeks post op where you have to take it easy.

[Hidden in reply to Periodical]

May I ask if it was an endo specialist or a general gyn?

[Periodical in reply to Hidden]

Specialist. I was on the waiting list for public healthcare (am not in the UK) but was advised it would take 8 months plus so went private as am heading back to UK soon & didn’t want to join another wait list there. The Dr was v good - I had none of the shoulder pain everyone talks about either. But it was very expensive.

[Hidden in reply to Periodical]

I was going to be operated on by a general gyn, since that hospital doesn't have endo specialists (public). I cancelled the surgery and I'm going to try a referral to the only public endo center in my area. Worst case scenario, I have insurance and I will go to private care. Meanwhile, I'm trying a natural approach with fitotherapy and TCM.

[zbcq]

i have just had laparascopy a month ago to remove an 8cm cyst. I am feeling OK, my bowel symptoms improved massively, could be also because i improved my diet. I went to a superstar surgeon in France though, who only does endometriosis (like 3 surgeries a day) because wasnt convinced by some surgeons I have seen. Try to go to a surgeon who really only specilizes in this. I had the extra concern that I didnt want it to be a wreck for my fertility and only the doctor in France seemed to care... i have heard the supplement called NAC is very good for endometriomas .. look it up!

[Hidden in reply to zbcq]

Thank you so much. How are you feeling? I'm vegan and I've ditched meat and dairy since I was 17. That's one of my points exactly, my doctor sent me to a general hospital.

[zbcq in reply to Hidden]

I respect everyone's choices but I believe vegan diets may be a difficult one to follow for your symptoms control. I have followed an anti-inflammatory diet (check DR Andrew Weil's food pyramid), so have ditched processed food, artificial sugar, red meat, gluten. had ditched dairy a while ago (but now reintroduced Kefir which is low in lactose and it's not triggering me, I wanted to increase intake of fermented food). I eat a lot of fatty fish like salmon and organic lean meat (chicken mainly). it's important to have a good protein intake to be honest i am feeling ok, some days quite tired, im just bummed i cant work out again yet. surgeon prescribed dienogest so this may influence things

and NO dont go to a general hospital !! go to an endo specialist center. Check if the doctor does any research etc, the one I went to is a professor who's passionate about this and so was very re-assuring.

[Hidden in reply to zbcq]

I have no symptoms at all. I'm one of those asymptomatic cases, it was an accidental finding during a check-up.