Ovarian cyst after hysterectomy

[Kangalou]

I had a hysterectomy in August 2018. I’d had endometriosis and the hysterectomy confirmed adenomyosis.

My recovery was straightforward and I had a great few pain free months. I got back into sport and was really feeling great.

Pain started a few months ago - very familiar and I was gutted. Went back to the GP and asked for some painkillers; he referred me for a scan.

The scan showed a small (4cm) cyst which may be a simple haemorrhaghic cyst but could equally be an endometrioma. They referred me to gynae.

After the scan (23 Aug), my pain got progressively worse, sometimes so bad I was unable to move and close to being sick. That’s subsided now, but has left me with a massive bloated belly, more of an ongoing period pain and generally feeling knackered. The bloating is making it hard to eat.

I’ve seen a gynae consultant since my scan and he basically said to keep taking painkillers and he’ll repeat the scan at the end of this month.

If the cyst is still there then he’ll operate, if not he’s suggested I go on the pill.

I’m a bit worried (terrified, actually) that the scan will show no cyst and I’ll be left to struggle with what could be a recurrence of endo. I’m so gutted to be feeling so awful again and I can’t bear the idea of being back in that dark place.

I guess I have two questions which I was hoping you ladies might be able to help with:

1) has anyone been in this boat and if so, what happened? Any tips for getting the best treatment?

2) has anyone taken the pill after hysterectomy to deal with endometriosis? What was your experience?

Thank you! X

[hysrecovery]

Sorry to hear you aren't feeling well. I had a haemorrhaghic cyst. It was extremely painful and I was unable to stand for several hours. It was on my ovary so they removed the ovary during my hysterectomy. They never attempted to treat it with the pill. Hope you feel better soon!

[BeachSheller]

I am not in the exact same boat as you, but I currently have two 7cm endometriomas (hemorrhagic) on each ovary and the pain feels exactly as how you describe. I’m waiting to get a hysterectomy ASAP and I’m going to discuss this with my gyn/onc because I’ve read several ladies experiencing a reoccurrence of endo as well. I hope you’re able to get it resolved quickly!

[Jac71]

I too had cysts on both my ovaries after a hysterectomy, they operated again, removing ovaries and cysts and after recovery I felt much better. However a year on, I started to feel something wasn’t right again (but not as bad as before). Scans showed ovarian tissue left behind had grown and developed new cysts! I think if I had known this could happen and had been offered an no surgical option I would have tried it first. I hope this helps and you feel better soon x

[Kangalou in reply to Jac71]

Thanks all! This is really helpful.

Jac71 I’m really sorry to hear you went through that....

Can I ask - do you remember what type of cysts and how big they were? Mine is really quite small at 4cm. I’m thinking it will be gone by the time I have another scan (2 weeks) and I’ll be left in pain with no solution! Obviously need a better, more positive attitude but it’s hard sometimes.

I hope you are feeling much better now. X

[Jac71]

The cysts on ovaries where 8cm and 5cm, cysts now both around 4cm. Current cysts are being reviewed every 6months. Hopefully you will get a solution soon. Take care x

[Kangalou]

Hi ladies

I saw a few people were following this post so thought I’d update.

I had another scan and the cyst was roughly the same size. A doctor did the scan (new for me) and said he felt it was an endometrioma. Obviously not a massive one, but there nonetheless.

I’ve since seen my consultant - bit of a funny meeting. He gave some options but wasn’t clear on a recommendation initially.

Options were:

1) medical menopause- done that before, not loved it. He said it wasn’t really a long term solution due to osteoporosis risk, not great side effects etc. He also said it wouldn’t help pain from this cyst.

2) better pain relief - using pregabalin etc. Again, done this and he noted the side effects (brain fog) aren’t great.

3) surgery. Downside being this would be my third op in 20 months for endo. Followed by suppression treatment (ie the pill). Which he said is a bit controversial.

I opted for surgery. Once I’d done that he seemed to be behind the idea but still a bit reticent. By the end he seemed convinced it was the right move... but all felt a bit odd.

I have an op date for the end of this month. I’m in the U.K. but using PMI hence the quick date.

Hope everyone has a good weekend.