Endometriosis UK
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Need advice feeling lost

Hello everyone this last 12 months have been a whirlwind for me, briefly in Jan 2014 I noticed my period was very late 72days! many negative pregnancy tests later I went to my Dr. He suggested I go for an ultrasound where they found lots of cysts in both ovaries, was referred to gynae and diagnosed with PCOS. However by then (Mar) I was starting to get period like achey pains when going to the toilet and feeling very uncomfortable (pains around ovaries esp when sat) in the week before my menstrual cycle. They suggested endo and I waited for a lap. 17weeks later (Nov) had the lap and the surgeon found stage 3 on pelvic walls and under ovaries. My surgeon claimed he'd removed it all and I'd be fine from now on with a 20% chance of recurrence in 5 years (I was not convinced by his confidence after reading posts on here!)

Well 8 weeks post Lap and I feel like the whole thing was pointless. I have been having occasional achey pains but worse than that the bladder symptoms are awful. I'm back to feeling like my bladder is never properly empty, especially in the evenings. I've been spotting blood for 14 days straight and have period style aches after urinating. Can't sleep through the night without needing the loo and I am exhausted! Heading back to my GP but i am doubtful he's going to have a solution.

I was hoping someone might be able to help me out, is this normal? Does it get better? or is this potentially as good as it gets? For women with ovarian cysts have you found the pill beneficial? (I'm not on anything atm) I've been very fortunate that I've never had the excruciating pain that other women suffer from.

Any replies would be greatly appreciated

Best Wishes to you all

3 Replies

Hi Mialya, I am also 8 weeks post op and still having pains spotting etc and still exhausted. This was my third op. Don't fret too much, I think because we start to feel normal within weeks we think we have healed but what you went through was major surgery and they aren't gentle about it!! It can take as long as 6 months to fully heal internally. I would however talk to your GP about your bladder it sounds to me like you might have a bladder infection or something. I have trouble with my bladder too sometimes which I have been told could be linked to my adenomyosis, but it has never woken me up in the night.

I also have ovarian cysts which always get better for me when I have a really good diet and exercise regularly, I have the coil which reduces all of my symptoms as well.

Good luck and I hope you feel better soon xxx


Hi, I have similar pains in bladder and when I poo it's terrible - when I'm on my period. I had my lap in April, then was fitted with a Mirena coil soon after to manage pain (which it didn't - it anything it was worse). I went to the doctors last week and asked if the laparoscopy would've picked up any endometriosis in the back passage - as that's where a lot of my pain is - he said they wouldn't have been able to investigate that area but he agrees that it probably has spread to that area as it can !! So I've started Prostrap injections, as he said it'll supress the pain in all areas. It's early days so too early to tell if it's going to work! Hope you get yours sorted x


Sorry to hear you are feeling so unwell. The pill was very helpful for me, I have endo and cysts. While I suffer from pains, and tiredness and a very tender stomach, I am waiting on surgery. I imagine the pill, without any breaks, would stop your periods all together and greatly help. Thats what my doctor has recommended for me post surgery anyway!

Hope you feel better soon


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