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Endometriosis UK
37,513 members • 32,951 posts

Endometriosis and Adenomyosis

I am 36 and 8 years ago I took Lupron for Endometriosis pain and it worked miracles for it. Now I am back at square one with pain and now the doctor has diagnosed me with Adenomyosis. Anyways I cant take hormones due to having a clot a year ago in my leg. SO he is recommending my uterus out. I am not past going but different times of the month my legs, abdomen, back, and upper stomach hurt so bad. I feel miserable when it hits. Its almost like it takes it by spells. Anyone have these symptoms?

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Hi I have Endometriosis and Adenomyosis - diagnosed in February this year. I am lucky that my pain is mainly with my period and very mild at other times at the moment. It is pretty intense with my period though affecting my legs/abdomen etc. We are currently trying for a second baby through ivf so not really treating it at present which worries me a bit. Have you looked at the Adenomyosis Association website - it has lots of useful information about treatment options. It seems like hysterectomy is the last resort but will take away the adenomyosis pain. I think it is recommended that you keep an/both ovaries to protect your bones/heart etc. You would also want them to look at and excise any endo at the same time if possible otherwise you could still be in pain from this. I have adhesions between my uterus and bowel so hoping to avoid a hysterectomy if at all possible but for some women it does seem to be the best solution.

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Hi I was diagnosed with Adenomyosis last year, I also have conjested varicous veins on my uterus, I've tried everything, I take naproxen and Zapain and Amitripline at night. It does come in spells for me it's when I'm cold and been standing a lot all day!

I had a laparoscopy and they gave me a mirena coil would you be able to have that.

Unfortunately my only option now is a hysterectomy. I tried Zoladex injections last year they did work but like you hormones don't work for me very well as I get migraines.

Hope you feel better soon.

Xx

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Does the Mirena coil have hormone in it?

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Hello...

I'm 36 too and have endo and adenomyosis. I has a lap 8 weeks ago where endo was found on my uterosacral ligaments and removed. My gynea suspected adeno before this and after the op said my uterus is very bulky and enlarged. Although my back ache is better, I like you have moment during the month when the pain is really bad and this month it almost saw me in A&E!

It hurts everywhere and radiates down my legs and leaves me feeling bruised for weeks afterwards where being on my feet for too long gives me back etc. I can't take hormones either so I have been booked in for a hysterectomy on the 5 Jan. I joined a hysterectomy site and have been reading up on others stories and I now can not wait for my op....

I'm counting the days.... I long for the day I will wake up refreshed and in no pain. Every day is now a struggle I wake up feeling exhausted and have bouts of pain randomly and a couple of weeks before my periods I get hectic migraines.... I'm done! I have had enough so am welcoming the hysterectomy with open arms. This year has been aweful and I don't feel 36... I'm more like 76... its been horrid and I can't wait for my life back.

Please feel free to private message me if you want to keep in touch as we are in exactly the same boat. I can also then give you the link to that website as I don't think I'm allowed to mention it on here.

Hope you have a good day x

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Wow thanks for sharing with me. Girl you have been through it also. I guess my main scare is what if my doctor is wrong and my uterus is fine and they take it out. I know Im done having children but I have that fear. I just also know I don't like having pain like this. I feel bruised as you said. I feel bruised all through my torso and even have breast tendernous. Not sure if you have that or not. I do get a headache. Its usually a few days before cycle starts. Do you have pressure down low like even close to your pelvic bone also? That gets very bad at times. One thing that happens is if I get constipated it flares it up worse. After I use the bathroom good it is less intense. Does this sound like you at times to?

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Yep... that sounds exactly as me! I have had to start using lactose every now and then to try keep me more regular as since my lap I have struggled with constipation and jeez that hurts so bad. It's the same if I have a full bladder. I thinks it's all the pressure on the inflamed area that causes it?!?!

I done Carr anymore if the gynea is right or wrong. I have had bad periods since I was 10! So if the whip it out and it was clear... well at least all the pressure will be gone and no more bad periods. I have too many signs indicating that it's adeno.... and my uterus is bigger this year than last year so I want it out now. I'll be keeping my ovaries as doc says I'm to young to have them out as I need the hormones.

I have a lot of pressure down below and sometimes it feels like it just wants to fall out. I get very bad headaches and migraines before my periods too. I'm due next week and I have had the mild cramps already start.... They will get worse and I have woken up shattered and with a headache! I am a nurse with a very demanding job.... my boss has kept me office based since all this crap and it looks like she won't give me anything heavy until after the op. Next week I'll be doing flue jabs! That's fine... but it's been months now and I feel like I'm deskilling, missing being with the patients and my staff are getting annoyed! My relationship has been through the mill this year and my kids miss me doing stuff....

It's ruined so much! I'm taking my life back next year! I can't have any more kids so why keep it? It has no use anymore besides making my life hell... I find being angry with it helps me deal with losing it. Lol

Hope you are ok today xxxx

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Ok sorry for the long delay. I have made my surgery apt for dec 16th so I can still take advantage of my deductible being met. I had a terrible weekend after my exam on Friday. I hurt right in the center of my abdomen and it truly has got on my nerves. I never cry but it is causing me to. I am going for it. I have had a blood clot in the past so he is putting me on Lovanox shots for that after surgery. So I am hoping all goes smooth with it. Now my main concern is sex. I have had two ladies tell me it did not change there sex life it made it better but I read on the internet that it kills it. That is one thing I enjoy with my husband. LOL! Have you heard anything on the after affects? Also they are only removing my uterus and cervix.

Please post and let me know when you do your surgery.

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Hello....

Wow... The 16th... good on you! I would kill to have mine now... saying that I only have 3 weeks to wait.... but when in pain it's a long time. I have had a change in surgeons for the better... I posted about it yesterday. Op is now on the 3rd and I landed up meeting a proper specialist without realising my luck...

He will now be doing it laparoscopically so recovery will be easier he will be cutting out all endo found including spots already burnt as he said the endo will still be in the tissue and will look at removing my left ovary which is where most of my pain comes from. He thinks it's attached to my bowels or bladder but as he specialises in this area will be able to remove it!! All my tubes are being removed too to reduce cancer scare.

I have had mixed reviews in the sex side of things.... I know you can get very dry afterwards but that happens of you loose your ovaries and from what I gather those that struggle have lost their ovaries and it's the lack of hormones that cause libido to drop... so you should be fine as you are keeping the ovaries. So your cycle still happens but no period and pain etc...

Hope this helps... let me know how it goes honey. Good luck for next week xxxxx

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Thank you so much. You have been so much help. He said the same thing to me about my left ovary. Wow our situation is so much alike. I will keep you posted and I cant wait until its over and I feel better. I will tell you all about it. So excited for you. three weeks isn't long at all. At least you can be more prepared for Christmas. I had met my deductible so that's why he did it before the end of the ear. I will be in touch:)

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Mistiek, did you get pregnant with Adeno, or was you diagnosed after please?

My symptoms sound nearly exactly the same as your symptoms. Am trying a 5th round of ivf very soon but wonder if this will cause problems if I do fall pregnant. Also, I'm hoping to transfer 2 frosties but worried the Adeno will prevent a baby or two growing. I haven't got pregnant yet so very much wishful thinking but wondering if it will cause probs. Thanks x

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Hi sandytone36, Sounds completely like me. I was diagnosed with a bulky inverted uterus with Adenomyosis and stage 4 Endo but am still trying ivf and wondering, if any what the outcome will be if I do get pregnant. I get pressure near my pelvic bone, heavy thighs and legs. I always thought it was the Adeno that caused my constipation and pain, but it does flare up. After I use the bathroom it's more improved. I wonder if stress causes it to flare up and cause pain? Best wishes x

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Hello I'm sorry to heard but we are exactly in the same boat as I'm adenomyosis sufferer.as my period stop all pain I used to suffer gone but my belly look so big it looks like I'm 6 month pregnant.sometime I'm so frustrated why haven't any treatment for adenomyosis and bulky uterus.

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I am 36 and I have all of those symptoms plus many many others. I am going to the doctor on Friday to see whats going on; they think either a severe case of endometriosis or cancer since I have not had a pap in 11 years. I have a LONG history of clots,.in my legs and lungs and I can not take hormones so it puts me in an odd posititon. I am being told if I have a hysterectomy I need to be on hormones forever,..I can't do that.

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Oh my! Yes not being able to take hormones is an issue for sure! Its horrible you feel like you have no options. Can they do a pap and check to see how that looks before they jump to thinking it could be cancer?

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Friday at 11 :) I have a pap and ultrasound.

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I hope your pap comes out great. Please post. I made my surgery apt for dec 16th so I will be in touch.

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I am still waiting for the results from all of my tests they said about 3 weeks until the pap results are back and they still havent called me with my ultrasound appointment but we do know something is wrong with my right ovary. Thank you.

Good luck :)

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