Endometriosis UK
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So I had my lap on Wednesday, and I don’t have endo :/

It’s been very emotionally hard for me the past two days, I didn’t have a very good experience in the hospital either.

I arrived hospital on Wednesday at 11.30 and had my lap around 3.45 which I just went into full panic mode and cried in front of the whole surgery team which was embarrassing, I just didn’t know what to expect I was so scared but I just remember falling asleep having a little dream right before I woke up it was so weird. They said my surgery lasted 20 minutes, so from that I could just tell they didn’t find endo. I wasn’t in recovery long as I was fine so was back on the day ward where the surgeon came to speak to me, i must’ve been half asleep because I swear she said it was my right ovary, but she said it was stretched like a guitar string and stuck on my abdominal wall so they fixed that. But it was my left ovary I later found out, which I never have had pain on my left side it’s always been my right side :/

It took me about 40 minutes to pee but I finally did and I drank a lot and ate but my heart rate was 120 so I had to stay the night. Which I’m glad I did because I then got to see the surgeon notes the next day, but at the same time the next day in hospital was awful.

They only gave me pain meds at 6 in the morning and I didn’t get discharged until 4pm so it was a very painful day and they would only suggest paracetamol to me which I knew would do nothing to my pain I’ve been on so many different pain meds my draw is like a pharmacy I become resistant to them quickly. Anyway the doctor came in the morning and said there was no endo found and that I have pelvic congestion so my veins are enlarged or something in my pelvic area I don’t know much about it but I have an appointment in 8 weeks where I’ll know more. The only suggestion was for me to go on the pill and have continuous pain meds, which I’ve been on the bloody pill for a year and a half and I’m always taking pain meds so I’m just feeling hopeless I’m still gonna have all the issues I had before my surgery :/ it’s been hard for me and my partner because sex started hurting about 7 months ago and the past 3 months it’s just something I can’t do anymore and we were hoping I would get relief after this surgery but no. I’m still having my bad leg shooting pains and knee pain from my nerve, my bladder is still bad. Still have my pain in my groin.

I can only read what’s on the internet about pelvic congestion because they didn’t explain anything, and it’s very rare in my case but I have all the symptoms. It’s in women who have had multiple kids and stuff, I’m 19 never been pregnant I just don’t understand why I have this. I just feel incredibly low because it’s just a pain killer and hormone managed thing which I’ve been doing anyway for months :/

I just feel like my life just keeps going down hill constantly, I just want to work and move out and make my relationship better I know my boyfriend says he doesn’t mind we can’t do anything but I just feel so bad for him

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I could imagine it being such a hard time for you.., at least now you know for sure you don’t have Endo which is great news.. I’m still waiting on my diagnosis which sucks! & aswell you are so young! It must be horrible going through this, hopefully with your next appointment you should be able to get a clearer understanding of what is going on, I wish you all the best! Xx

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Hi,

I’m so sorry you’ve suffered for so long. Your story matches mine almost exactly. When I was 19 (I’m now 25) I had my first lap, and was diagnosed with pelvic congestion syndrome. I was only under for 20 minutes too, and was fairly badly treated, they assumed I was making a meal of it.

Fast forward 3 years and I was diagnosed with endo by a specialist. Endo is notoriously difficult to find if you don’t have the right surgeon. Fast forward 2 years, and I’ve also been diagnosed with adenomyosis too. The point is, don’t give up. I still have no clue what pelvic congestion syndrome is, and although I don’t doubt it’s painful, it didn’t explain my awful symptoms.

Please don’t give up. You’re young, and should be living your life to the absolute maximum. If you don’t feel this is the answer, keep pushing - they can’t ignore you forever!

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