Many endo questions please answer if you can !!!

Hello everyone

Had endo since 2005 ! Iv got two kids and I'm 31....

Iv got great gynae care but I'm a difficult patient I think because I can't have any hormone treatments because I'm prone to blood clots....anyway... I they found endo on my sac of Douglas, left Fallopian tube, uterus ligerments,bladder and prob somewhere else I can't even remember ! How do you know what grade or type of endo u have? And I had the Miranda coil for 5months I bled the inter time and has pain web I'm guessing my period was there...I got it removed n now I'm have nerve problems in my back hips and thighs ?! Does any one think the removal was related ? Also does anyone have low blood sugar problems due to endo? Anddddd lastly sorry I never blog does any one now how to tell a new partner about the pain you can have during sex! I bottled it and just laid back or backwards shod I say and thought of England but oh my goodness it's put me off big time think I'm goin to stay celebate :(

4 Replies

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  • Doctors like to put things in nice neat little boxes and came up with the grading system 1-4. grade 4 being 'severe', involving invasion into multiple organs. But endo is not like other diseases, a woman with grade 4 endo can have no symptoms, and a woman with grade 1 endo can have severe debilitating disease. The grading does'nt really serve any purpose that I'm aware of, as treatment is based on severity of symptoms, medical history, desire to conceive etc.

    Interesting about the blood sugar. I have to eat regularly otherwise my blood sugar drops dramatically. Had never linked it to endo before, but it did seem to start around puberty. hmmm

    I also have pain during sex :-(. I also used to just grit my teeth and get on with it but when my partner found out he felt really guilty that he'd hurt me, so I decided honesty was the best policy. Some suggestions I've tried have helped: have a warm relaxing bath before, have a glass of wine if meds allow, if not have some pre-emptive meds, take charge- control the pace and positions and you may find some positions better than others. Telling a new partner will be a good marker of whether he/she is going to be worth your effort.

  • Thank you for your reply very informative it's true what they say misery loves company....I didn't no that look blood sugar drops Wer related either and I spent years goin back n forth to doctors tryin to figure out its cause I gave up in the end...until may last year when I was goin to hav a lapar thingy you no Wat I'm on about lol and they said I couldnt eat wellll if I didn't I would faint so for some reason I googled low blood sugar and endo and ther it was! All those years ....anyway I had a partner 7years he was gentle n kind n looked after

    Me but after we broke up iv found it do hard being really open about my endo. To be honest I feel like I'm being punished!

  • I have endo on my Douglas part as well but they don't want to operate as it can be risky. So now on decapeptyl n hrt to try shrink it. I also suffer from low blood sugar if I don't eat! Does it mean we could get diabetes aswell? My mum is diabetic so I should be careful. I don't have a partner just now and I'm terrified of how to deal with that if the time comes. I was told severe endo n grade 4 and mine was extremely painful so I knew something was up. Hope u get things sorted tho xx

  • Hi, Hope everyone is ok.. i think nerve pain can be related to endo i have heard but im not 100%,. mine was graded during my diagnostic lap. i had a new partner and i was just honest with him and told him that i had an inflammatory condition which sometimes causes me pain during sex.. but i no longer get pain during sex anymore.. since going on a gluten free diet my pain has become pretty much zero. its been great. Can i just ask as im trying to conceive.. did you have your children before your diagnosis or after? xx

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