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Endometriosis UK

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New to site. Please help!

angee_1 profile image
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Hi all. Need some help here. I've had chronic pelvic pain since started period at 12. Now 39 and after painful sex was reffered to gynaeo. No infection. No ectopic pregnancy. Saw gynaeo again and although suspect endo no laparoscopy until I lose weight. I have pain every day and very very sore right on my womb area. To the point I can't walk. Lower belly saw to touch and soft and tender. Is this all in line with endo?

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Buttoon profile image
Buttoon

Hi. Obviously I am no professional but it certainly sounds like it could be. I was experiencing pain during sex and had 14 UTIs in 12 months - this is what FINALLY made my GP say "Hmm, perhaps you should go and see a gynaeno" and it was him that listened to me, then examined me. He felt something straight away and was pretty sure I had endo so I was booked for an exploratory laparoscopy.

I too had awful pains during my cycle and ovulation and could walk or stand up straight.

Do you have much weight to lose? I really wish you well and that you get that lap. soon so they can see what's going on. Good luck x

angee_1 profile image
angee_1 in reply to Buttoon

Hi thanks for the message. I have about two stone to lose before they will even consider lap. Gynae has given me hormone injections for 1 every month for 3 months . thankfully trans vaginal scan was normal no cysts. Womb biopsy normal and endometrial lining normal. It's just the pain is so debilitating and inflammation and swelling in belly and unervous belly button. Not touching tramadol! It's worse before my period but pain continues after bleed ends. That's the worrying bit!

Hope264 profile image
Hope264

Endo can manifest in as many ways as there are women. One way I have read, that if your pain is cyclical it is more than likely endo. I hope you can get a procedure to check soon too but that is not an excuse to your doctor(s) to offer information and treatment for possible endo. If your in the uk there is some great information on this site on accessing good care, look under poster 'lindle'

angee_1 profile image
angee_1 in reply to Hope264

Hi there. I will do. Thanks for the reply. The pain after bleed was acute in July and continues daily. My weight is a risk to lap. Gynae doesn't want to risk lap now but would've if scan showed something, hormone injection only been on for two weeks, fingers crossed I get some respite. It's like ground hog day!

Hope264 profile image
Hope264

Hi, I live with stage 3 endo, it had never showed in any ultra sounds but was found during pelvic surgery for another thing. I have never tried a hormone injection but now manage things with continious use a dienogest combined pill called Qlaira. As you will read here general Gynies not always so good at finding and removing endo even with laproscopies. I also use Krill oil to try & reduce inflammation, hope your treatment works. I have found this site very helpful for feeling supported also when advocating for myself in medical system.

angee_1 profile image
angee_1 in reply to Hope264

I am finding out so much already. These injections are horrible the headaches are the worst! I'm realising just how complex this is. I'm glad to hear from you, thank you again

Have a look for information on adenomyosis. Your symptoms could point to that. If you look on the endopaedia website the section on there is very useful. It could well be that the biopsy taken was from part of the uterus where there wasn't any adenomyosis present.

angee_1 profile image
angee_1 in reply to

I will do the emergency gynae did say lining was normal, so will push for an endo expert, I have heard of centres round the country.

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