Adenomyosis....any one got any adice/help/experience??

Hi Everyone, i thought i would try this web site for a bit of help and support this in brief is my story.. My name is Sarah i am 38, married with 3 children 15, 7 and 3

18Months ago i was admited to hospital with severe left handed pain, after swabs and inspections they finnaly found a 5cm cyst on my ovary, however i had other Symptoms, constant fatigue,bleeding after intercorse, pain during intercorse, heavy periods and clots. GP Consultant and myself all thought it was endometriosis.

After a lot more polking around and waiting for more consultant appointments they did a laparoscopy, which came back clear. I was told that i had a very health cervix etc and that i had nothing gynecologically wrong with me and that it may be a bowel complaint.

Again after waiting for a bowel consultant to see me, he didnt seem anything wrong and that would cause all of the above.

In Feb i went to my GP and asked for a second oppinion, it envolves me driving 30 miles to each appointment but as long as i get seen i dont care. In March i was sent for an MRI scan, which didnt show any endometriosis but did show some disease in my colon, she then refussed to see or treat me untill i went back to the bowel guy...anyway after alot of chasing round and and 4 month waiting the disease that showed up is no where near the pain and is very comon and nothing to worry about.

At my last gyny app she mentioned in passing that my problem could be when the womb lining grows into the musle, i asked would this show up on the Lap and she said no. (i googled it and came up with Adenomyosis) i have every one of the sypmtoms, the massive pressure when i am on my period in my pelvis and dragging sensation down my legs, also dizzy spells. When i asked her if it wasnt endo why did i still feel so poorly she souted back are you wanting a Hysterectomy??

I have my follow up app for this next week, and a guarantee from the bowel cons it is nothing to do with my colon.

I felt like crap now for 18 months, my issue is why did no one think to consider this before, it could have saved me and my family an awful lot of upset and pressure on my husband. Most weekends i am spent in bed, i have had to dramaticaly reduce my work load at work.

I have got to the point now that if they did offer me a Hyst i would snap their hand off.

There seems to be a lot of people out there that has/had Endo but Adenomyosis still seems quite a new thing.

Hope that all make sence, would be great to hear from anyone with any help or advice or any knowlage of all this

12 Replies

  • i can relate to alot of your story, i had various scans, biopsies etc etc, no lap though but they keep telling me my pelvis is a picture of health apart from the large ovarian cyst i had which then disappeared and one fibroid (oh but we say you can have one fibroid) - my symptoms are quite similar to yours, last year at my hysteroscopy they pressurised me into having the mirena, saying that if biopsy is normal (it was and i expected it to be to be honest) yes they said i would only be offered the mirena as the next treatment option and that it had to be done at hospital due to tilted womb or whatever, so thinking i may as well have it put in whilst me legs were in the air, and save the hassle of another hosp app, i went for it. they said my periods would most probably stop, or barely have anything.....i'm still waiting for that moment and its been in 12 months now - i'm in far more pain than i was before, my periods went totally mental, all over the place - i'm now at the stage of pretty much 2 weeks on and two weeks off, each period gets heavier and clots are starting again, all if which proves the mirena is not for me, i feel i've given it a fair chance though, i also had some thinning of hair which is what has upset me the most.

    i last saw consultant on monday, they have agreed to remove the mirena and do an endometrial ablation, as i would be scared to think at how heavy my periods would be without anything - i'm trying to be positive that it will help the bleeding, they have said it won't help with the pain, but one less thing to deal with is better than nothing.

    i'm guessing it's just what women like us have to go through, our symptoms/condition is not life threatening as far as the consultants are concerned, and it seems they will try to do as less as possible before going into the surgery route, which i kind of understand but it doesn't make our lives easy with such chronic pain.

    i can't really offer you any advice i'm afraid, but just thought it might just give you another insight to somebody elses predictament - it's hard living like this isn't it? i have gone from working 45-50 hours a week to just 12, so money is much tighter, which makes me feel guilty for putting more pressure on my husband, i'm lucky my husband and sons are very supportive, they know when to leave me alone lol, but i also feel guilty at how it affects thier lives too, we don't plan anything as it's always a case of 'see how i feel' - i've been off sick this week, due to being on my period, i can't even stand up straight at the moment so am walking around doubled over, i'm sure my customers (i'm a mobile hairdresser) think i'm out enjoying the sunshine, if only - take care and i hope you get sorted out, let me know how you get on next week xxx

  • Thank you Worth71, so much for your reply. Although you know there are lots of people out there that have similar problems its good to read that your not alone.

    I was offered the mirena coil, as well as slowly putting me through an early menopause. That was the last but one time i saw thr gyny consultant. To be honest i would never have agreed to the coil. She said like you it would have had to be put in in hospital under a general, because the amout of pain i am in.I had a coil many years ago and just thought it would cause more pain than what it was ment to be doing!

    I also can relate to the effect this illness has oon your family. Pretty much the same as you wait and see how i feel before we can plan things to do with the kids. If there is somthing that we will be doing then i have to spend the day in bed before hand. My husband is fantastic and looks after our boys and demanding teenager and tried to protect me from tantrums etc.. but there is also a huge amount of pressure on him as family and friends not really that helpful.

    I think if we were walking around with a leg in plaster or an arm in a sling we would get my sympathy. Also the financial aspect of it all adds to the pressure.

    It does sound like the mirena isnt doing what it should for you, it sounds awful, what pain killers are you taking? Have they said when they will be taking the coil out?

    How old are you if you dont mind me asking? how old are your children? When i go to my app i keep telling them the amount of pressure this has on our family and husband and they just dont seem to listen. I thought having a female cons this time round she would be more sympathetic..i was wrong.

    Why is it that we have to push for what we want and if your not happy you must push for what outcome you want. This is my second time round again and to be honest i am at breaking point and not taking any prisioners...

    Also what are your hormones like? every month i have cysts forming on my ovaries, that go down after my period starts by my hormones all over the place.

    So so frustraiting

    Hope you try and have a good weekend if this weather stays nice, there is nothing worse than having to spend the day in bed when its dry let alone sunny outside!!!

    Take Care

    Sarah xx

  • i'm taking co-codamol with either mefanamic acid or voltorol or naproxen, i have tramadol but i don't take them as i pretty much am out of it, even with co-codamol i'm a bit spaced out, i'm rubbish with tablets, the other tablets upset my stomach too so i take omeprazol with them, but most of the time i do try to ride out the pain with a hot water bottle, although not in this heat we've had.

    they haven't given me a date for the removal of coil/ablation yet, i have to have a scan first too but imagine it probably won't be long though as i'll need another pre-op else.

    i'm 40, my kids, well i say kids lol, one is 21 haha, the other is nearly 15 - they are very understanding as is my husband, they know when to just leave me alone bless them, i don't know what i would do without my hubby, he does all the shopping and so much more, he tells me off when i do stuff round the house, but i feel to have to try to contribute as much as i can, but i just do it in short bursts.

    my hormones are all over the place yes, and i do get cysts on ovaries too, i had quite a big one not so long ago but its gone now so its good to know they are going without any problems as such. and yes i have found female docs/consultants at the hosp not very nice at all, the male ones are much nicer, i wouldn't wish these problems on anyone but i sometimes think if only the female ones could experience just 24 hours in our shoes - and yes, if we were showing some sort of outward sign of illness maybe people would understand, and its not even about sympathy as such, but just understanding as in 'yes she has that condition which is why she is off work today or not feeling so good today'.

    i'm home again today, at the moment i'm not really in much pain in the front but back is really bad, probably because i spent most of yesterday trying to do housework and ironing bent at an angle, but my boys will help me this morning and then i will sit down properly and rest this afternoon, very determined to try to get out over the wkend though, even if just for a drive for a change of scene.

    i hope you too have a good wkend, like you say it's not always about advice on here, but just knowing that somebody knows how you feel is enough - when i'm on a good day, or even a good few days i start to tell myself that i'm better and it's going, i'm cured haha, but it soon comes back to remind me.

    you take care, and speak to me anytime, and let me know how your appointment goes xxx

  • Hi there, just wanted to say hi. I have adenomyosis too, was diagnosed with it in June after 6 years of pain and going to consultant to consultant. I'm surprised you were told that an MRI wouldn't show it because that's how mine was found, through having an MRI scan. Apparently I have a blocked junction (?) and the womb lining on the wall of my womb causes the muscle to swell which in turn causes my pain. My consultant suggested the Mirena because it has been know to help with the pain adenomyosis causes so I agreed. He insisted on doing the fitting himself. As I was concerned about how sore I am already ( I have painful sex etc too) he said he would inject my cervix with an anaesthetic to numb me. I think having the injection was the worst part, i was just thankful I had my husband's hand to squeeze. By the time I left the hospital half an hour later I was doubled over with period style cramps and pain, by the time I got home I was bleeding.

    The next five days were some of the worst I have experienced and I was ready to rip the damn thing out to be honest. It's been 4 weeks since it was fitted. I seem to have stopped spotting and have not bled properly since that first week, although I am sure that this is down to the norethisterone I am taking. I've been on it constantly for 2 years as a treatment suggested by my GP and mt consultant suggested I carry n with it until he sees me in August. I have an ultrasound on 6 August and am seeing my consultant on 13 August to see how everything is going. If this doesn't work for the pain then I fear a hysterectomy is my only option. I've tried 5 different treatments over a 5 year period and nothing has helped with the pain. I have at least another 2 months before I will notice any difference according to the consultant but I'm not holding my breath. I know I should be more positive but it's very hard.

    Would you have another MRI? I only ask because I was told if mine came back negative I'd have to have another one but with that coloured dye put in my veins to show more of my insides? I can't believe your GP shouted that at you, sheesh thats a bit much! I have been very lucky with my GP, I've been seeing her for years and she's studied women's health for years. I agree with worth71 though about female consultants - the first one I had was horrible, wouldn't believe anything was wrong and I had to fight for an ultrasound, once it showed I had problems she changed her tune. I have Polycystic ovary syndrome so my ovaries are covered in cysts and enlarged. I wish you luck and stand your ground with the snouty GP, you know your body. It's just a shame we have to fight for what we need.

    Take care and remember you're not alone x

  • I have some endometriosis and suspected adenomyosis, although it doesn't seem to be too severe. I also had some bowel issues - and we're still not sure whether they're related to the gynacological ones or not. So I feel a lot of sympathy for your situation.

    At the moment, I am using mirena, which is doing a pretty good job on making my periods a lot lighter and less frequent (and therefore less pain), so although I know some people have had horrific experiences with it, my own experience has been good. I'm also doing the endometriosis diet, which is complicated but definitely makes me feel better. I've also had a laproscopy to remove the various cysts etc that were causing problems.

    I've seen two gynacologists. One said this treatment is fine. The other said the only way to treat the adenomyosis would be with a partial hysterectomy (ie. I'd get to keep my ovaries). I decided not to do this (yet) as it seems a bit dramatic and at the moment I'm coping reasonably well with the pain.

    Like you, I was working reduced hours and spending every weekend in bed before I started on mirena. Life was really no fun at all. My quality of life has improved a lot, and I think if it deteriorates again to the level it was at before I would be asking for the hysterectomy.

    It sounds as though you are not getting particularly good care from your doctors. I hope you manage to get the medical care you need soon. Good luck.

  • Thank you Ladies very much for all of your comments and advice.

    I have an app on Wednesday so hopfully shall be able to tell you all more.

    I am not 100% that the Andeomyosis had shown up on the MRI or not, i get the feeling that she was back peddling some what. And she is backing up the previous consultant that he hadnt even considered it.

    Will let you know how i get on. fingers crossed it will go how i think it will.


  • Hi everyone

    sorry in the delay for the update its just been such a crazy and hectic week and weekend!!!!

    Didnt get on as i hoped on Wednesday when i had my consultant app.

    She has agreed to do another laparotomy (somthing i requested her to do when i was first reff to her for a second opinnion) I personally didnt think she would at this point now not after she had mentioned Adenomyosis and how a lap doesnt show up on a lap and hysterectomy. I asked if any Adenomyosis had shown on the MRI scan and she said no and that an MRI scan doesnt always show it up.

    So i am left now waiting for an appointment to come through now for her to do a lap. She saod that if she does find any endo there and then she will treat it, if she doesnt and cannot find anything she will discharge me as her patient.

    I then mentioned about Adenomyosis and she said that she had forgotten that she had mentioned it at our last appointment and said that she would not do a hysterectomy without doing a lap first.

    Then she started talking about me taking zolaodex for 3 months to see how i got i dont know i really dont know.

    I tried to explain that my and my families quaility of life is so rubbish and i now want hysterectomy after a long discussion with my husband and she said just wait and see what happens in the lap, and if she were to do a hysterectomy she would leave my ovaires.

    All i want is to get sorted i was getting everything in place ready for if i was to have a hysterectomy, kids and family could be sorted out. But now i am left waiting for this lap wich i dont think anything will show up as i think it is Adenomyosis.

    Can anyone else relate to this????



  • have got app for another lap on 24th still waiting!

  • hi sarah

    just found your post whilst searching for other people in the same position as me. I have been ill for over a year now with severe lower left hand side pain, abdo cramps, some bladder symptoms and bowel issues. I have a very similar story but a different conclusion so far...

    I have had a laproscopy, cystoscopy and endoscopy - all clear, x-ray, transvaginal scan - all clear. I was told categorically that I have no gynae issues ie. pain is in your head. Until I paid for a private MRI scan on my GP recommendation. I cannot recommend this highly enough to you. It costs £300 and you can usually arrange it for the same week. I realise it is expensive but its is a much quicker way of getting diagnosed with adenomyosis, in fact I really believe it is the only thing that will show it. My laproscopy showed completely normal. I actually saw 3 different gynaes and the only common thing they said was that my uterus is very bulky - which is a sign of adenomyosis so I don't know if your have mentioned this to you?

    My MRI revealed an adenomyoma on the uternine fundus measuring 3 x 5cm. I have had 2 months zoladex injections and am having a sub total (keeping ovaries and cervix) laproscopic hysterectomy next week as really this is the only cure - touch wood. I have already had a mirena coil and that made things worse for me.

    Good luck in getting diagnosed, I will let you know about the hysterectomy. I have been told this is a very rare condition that is very difficult to diganose. I too have young kids and NO quality of life whatsoever because of the pain so fingers crossed we can all get fixed. xx

  • Dear Liz80

    Thank you for your post, blimey!

    I have had similar "its in your head "comments from both consultant and indeed my own family.

    I have had an MRI scan, but it didnt show any andenmyosis up, so the consultant said.

    I just found it unreal that she had mentioned it as a passing comment and that it fits the bill of every single one of my symptoms.

    I would pay £300 if it ment them finding anything. What do you think? i have laproscopy in 3 weeks time. I have already booked myself in for a follow up appointment 2 weeks after it to discuss the next steps. I dont think bulky uterus has been mentioned, other than the consultant seems to think the pain is coming from behind it. Zoladex injections have been mentioned to me also, that i may start them after the lap.

    Do you mind me asking how old you are? I know how frustrating it is, and at least for you there seems to be some light at the end of the tunnel. Did it take you a while to decided to have the hysterectomy?

    Sarah xx

  • Hello. I have just found this page and wanted to tell you all to please feel free to visit the Adenomyosis Advice Association website and find us on Facebook, Twitter, Linkedin and even on Friends Reunited. Whatever the question, please be assured your enquiry will be dealt with confidentially and free of charge. The association is based in the UK but is open to members worldwide, since so little is known about the condition. Take care x Danielle x

  • Thank you will take a look x

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