New Member, awaiting lap

I have always had very painful heavy periods, and PMS that messes with my life. In my 30s, I asked docs at my GP surgery a couple of times if what I had might be Endo. I was told no - definitely not, as my pain was not between periods too. In the end I felt that I had to just manage it on my own. I also tried asking for tests to see if I had a hormone imbalance. I was always told that the only option was to try different contraceptive pills repeatedly. I also saw GP about constipation, IBS symptoms and frequent urination.

This year a dr referred me for an ultrasound, and they found a 9cm cyst on my right ovary. Then CA125 came back as raised. MRI showed no ovarian cancer (huge relief) but 'likely severe endometriosis'.

8 years of frequent urination, about 12 years of IBS/constipation, and even more of dysmennorea and PMS. The myths about Endo are so damaging and it seems as if nothing is being done to correct doctors' false assumptions. Writing this down is bring up some of my otherwise suppressed rage!

Since March I have been having awful bouts of fatigue, leaving me semi-housebound. I try to get out at least once each day, and try to sit in the garden to make sure I'm getting some vitamin D. I have had repeated infections since March too (chest, UTIs) and been given antibiotics and prednisone a number of times. At my last gynae visit, I was told that fatigue is not a symptom of Endo, and that my fatigue must be due to something else.

Anyway, enough of my tale of woe. I am grateful that a) I do not have pain the whole month as some sufferers do and b) that I have found this forum and the Endometriosis UK charity. I called the helpline today and it was really useful.

I am now going to get a referral to an accredited endo centre for a laparoscopy instead of going back to the gynae who I don't trust. I'm also going to make further dietary changes.

I'm glad I have somewhere to come and find help :)

3 Replies

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  • Morning! Sorry to hear you're not well but I'm glad you're getting answers! I'm waiting on my lappy which has been cancelled twice so far. I genuinely cried when they called and cancelled it yesterday....! Had two weeks to wait and now it's September the 1st. I moved work and everything. I'm a freelance photographer so have to be very organised and don't take time off if I have a job booked. Never easy huh. I've also had a history of the same as you but kinda assumed it was normal. Weirdly. Just assumed that I was unlucky in life and shite periods! I've always been on the pill since 17-now 34. Only had a break to have my little one and fell quickly so didn't notice the pain too much (just assumed it was my body adjusting to a natural cycle).

    I'm the same as you and found the exhaustion hard. It's been so bad the docs assumed I had depression and I've been on citalorpram for four years. I'm starting to wonder if it's actually part of the suspected endo. I also had been diagnosed with IBS many years ago... And the bloating makes me look pregnant!! So embarrassing.

    I hope you get it sorted soon! I know how you feel xxxxx

  • I always thought something was wrong, but when you get that blank stare from a GP it can shrivel your determination and confidence I find :( ... and then I'd think that maybe it is normal / just something I have to live with. And in the past I thought the fatigue was just a total mystery / wondered if it was psychological.

    I'm seeing a gp in the morning to hopefully get my referral. Got to queue at the surgery from 7.30am - hope I can get an appointment. Wish me luck!

    I hope you're scheduled a new lap appointment soon. I'm not surprised you cried. Did they give a reason??

  • Just that they had a more urgent app :(

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