Adenomyosis Does anyone else have this? - Endometriosis UK

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Adenomyosis Does anyone else have this?

Romano1234 profile image
43 Replies

Hi,

I’ve been diagnosed with Ad and it was seen during an ultrasound. My main symptoms were very heavy periods with large clots at this time I only had back ache pain like an ache like when you’ve pulled a muscle or need to stretch your back out...ive had symptoms since 2012. Dr put me on a pill where you don’t get a period however in these last few month the pain has got worse. I get ovary pain, constant backache where I can’t bend! Bloated like I’m 5 months pregnant that gets worse throughout the day. However, I don’t get periods anymore really so no more clots and heavy bleeding. I’m due to speak to my consultant soon and will be asking for a hysterectomy as I can’t put up with this pain as it’s really limiting my life. I’m 38 and while I don’t want to go into an early menopause I don’t want to be in constant pain either. I don’t know if I have endometriosis also so I may have both diseases but was wondering if anyone else has these symptoms?

43 Replies
Romano1234 profile image
Romano1234

Also I get pain all month not just at period time. Does anyone else?

Thompson36 profile image
Thompson36

I have a long history of endo which on my 6th lap also found Ad and a stuck bowel. Full hysterectomy last February at 49 but still having issues from adhesions/scar tissue that no one is willing to help with. I thought the hysterectomy would solve my groin issues but it hasn’t. Pretty sure something is still stuck somewhere. My consultant advised the hysterectomy to avoid potential cancer risks in the future. Tried to avoid HRT but due to severe symptoms started it 4 months after the op which has helped. It’s a big decision to make but the op itself went very well just disappointed it hasn’t solved all of my pain issues. Good luck xx

Romano1234 profile image
Romano1234 in reply to Thompson36

Thanks. I’m sorry to hear you’re still in pain! Did you have full hysterectomy as in ovaries also? Was your symptoms pre- op similar to mine?

Thompson36 profile image
Thompson36 in reply to Romano1234

Yes very similar although the mini pill did help for a number of years. I had a full hysterectomy including cervix and ovaries by keyhole. I recovered from the surgery really well but within a few months the pain was back. It’s really low on the left side deep in the groin. I suspect it’s bowel or ligaments that are still stuck somewhere. I have trouble if I try and sit with my legs under me or leaning forward when sitting. I was having slight menopause symptoms before the op but they ramped up a few weeks after where I couldn’t cope so went on HRT patches which have helped. Good luck xxx

Romano1234 profile image
Romano1234 in reply to Thompson36

What were the menopausal symptoms? just out of curiosity x

Thompson36 profile image
Thompson36 in reply to Romano1234

I was having the odd flush and some insomnia before the op but after the hysterectomy it hit like a ton of bricks. Lost count of how many times a day I’d get the sweats and flushes, enough to make my hair at the back underneath wet. Brain fog where I couldn’t concentrate. Mood swings and a return of insomnia. My husband has always snored but I became a really light sleeper so now sleep separately. Vaginal soreness and dryness but that was sorted with pessaries from the GP which I only need occasionally. Sex drive disappeared. Increase in joint pain and weird patches of eczema. The consultant wanted me to go on Everol 75 patches after the op but when I did decide to I found they were too higher dose as I was getting really sore breasts. Now on Everol 50 which at times has been hard to get hold of but seems to keep most of the symptoms at bay. You may be lucky and not experience it as bad 🤞🏻

Romano1234 profile image
Romano1234 in reply to Thompson36

Wow really!

Are you pain free now as in the adeno/endo pain? X

Thompson36 profile image
Thompson36 in reply to Romano1234

Mostly yes. Still having very localised left sided groin pain which may be endo or scar tissue sticking something. It feels like something is being pulled in that area and can be quite painful in certain positions. I feel the consultant did not really listen when I described where I thought the pain was. He thought it was a stuck ovary but he didn’t say they were stuck after. He said my bowel was and there was some adhesions which he separated. The pain was back in the same spot within weeks. I think it’s deeper than maybe he could see. I was considering acupuncture before Covid hit so may look again when things get back to normal. I also have a physio who has said he may be able to do something with the adhesion tissue once I can see him. My GP arranged “women’s” physio after the op which involved an internal and pelvic floor stretches. The physio said that my pelvic floor was in a heightened state and was unable to relax fully so the muscles were internally tense. She said lots of women have this issue due to the years of pain. My cousin has recently been diagnosed and I feel for all of us in this situation xxx

Kimple123 profile image
Kimple123 in reply to Thompson36

Hi. How did you find the mini pill!? Iv just been diagnosed. After 3 years of searching for reason for my pelvic pain and feeling like sitting on a tennis ball! I’m 42 with 1 kid. I’m gutted but sort of relieved they found something and want to put me on pill for 2 months to see if solution. They may remove womb though but want to try this first. I’m terrified of mini pill symptoms! Iv had post natal depression and read they are not good for mood!

Thompson36 profile image
Thompson36 in reply to Kimple123

I had many years on Cerazette with no issues. They only time I had side affects were if they switched brand and gave me a cheap generic pill. I insisted with the GP that I had to have only this brand. No bleeding, only occasional spotting, no particular weight gain etc. My sister also went on this brand and has been the same. Looking back these were the years mostly where I feel my endo was manageable pain wise. I think what bought my flare up which led to the hysterectomy were to do with starting the menopause. Most of my issues are related to adhesions and scar tissue from previous laparoscopies xxx

Thompson36 profile image
Thompson36 in reply to Kimple123

Not sure if my reply notification went to you? But have responded xx

Kimple123 profile image
Kimple123 in reply to Thompson36

hi. We chatted about 2 years ago. Since then Iv been on mini pill which stopped periods and pain. It was brill. But the last 6 months Iv been super hormonal! Back ache, joint stiffness and off the scale with mood and breast tenderness! My libido has ramped up not down! But I don’t want anyone near me! I feel a mess so have a referral back to gynaecology guy today discuss removing the womb! Only because I feel the symptoms are maybe now related to the progesterone pill!!!! My sleep is terrible and I wake through the night needing to pee. This morning I’m awake with cold boobs and back ache! And irritability. My body just doesn’t feel comfortable or rested!!! And here I am! I just wondered if this was familiar to you? And if the hysterectomy helped you. I want to come off the pill to see if helps….but I know il not handle the pain of the adenomyosis if I do you see. So removal of womb may be only option.

Whoisthis profile image
Whoisthis in reply to Thompson36

It really sounds like potentially endo has been missed? Can you go privately? I found an amazing surgeon in London

Thompson36 profile image
Thompson36 in reply to Whoisthis

My consultant was at the private endo clinic in Birmingham. I had one previous lap with him on the NHS and I had to pay privately for the hysterectomy. It wiped out all my savings. I’ve tried phoning since then and just to see him is now £300! I just don’t think he listened when I told him where the pain was coming from. I feel my bowel or ligaments are still stuck but no one’s willing to help 😥

Bubblepoppy profile image
Bubblepoppy

I had all these symptoms from the beginning, I haven't had a hysterectomy I had a ablation on the womb for adeno I also have endo I get severe daily pain even after lap not sure which one hasn't worked lap or ablation I get more symptoms now 4/5 years later hope this helps xx

Bailey1981 profile image
Bailey1981

I have andometriosis in my uteris inside and out and pushing down on my pelvis I have the back ache pelvis pain hip pain and lower abdomel pain and my periods are horrible and very painful I am waiting for a date for surgery to have a hysterectomy just having my uteris removed which won't put me into early menapose and they are checking for endometriosis at the same time I am also 38 if they can leave your cervix and ovaries in then you won't get menapose hope everything goes ok for you x

Mountainwonder profile image
Mountainwonder

Hi, I had a hysterectomy in December last year aged 42 for adenomyosis and suspected endo. It turned out I had stage 2 endo. I don’t regret my decision to have it as I was severely anaemic requiring blood transfusion, in severe pain with periods and throughout the month. The pain would make me vomit and I couldn’t control it even with pain killers. I was bloated like you describe. My stomach lining was wrecked from taking NSAIDS. It was seriously affected my quality of life. My ovaries were also removed but I haven’t yet needed to resort to HRT as I am coping with the menopause symptoms apart from vaginal dryness which is making sex uncomfortable. I’m considering taking topical HRT treatment for that (Vagifem). I hope that you are able to get treatment for your symptoms soon. Take care x

Romano1234 profile image
Romano1234 in reply to Mountainwonder

Has the pain and bloating gone with the hysterectomy though?

Mountainwonder profile image
Mountainwonder in reply to Romano1234

Yes I haven’t had any pain since. My uterus was the size of a 3 month pregnancy! I don’t feel as bloated and I feel so much healthier and happier. I’m trying to avoid taking HRT as others on here have said that since taking HRT (Livial/Tibolone which is usually prescribed to ladies in my situation) their pain has come back. I think it’s because HRT can cause any endo remaining to grow back. My consultant seems to think I’ll end up needing HRT at some point if I can cope with the menopause symptoms but 8 months post op currently and I’m coping fine. Time will tell I guess. Who knows what the future will bring but at the moment I’m just so relieved to be out of the pain and suffering I had previously. Hope this helps you x

Romano1234 profile image
Romano1234 in reply to Mountainwonder

Wow! Thanks. Glad you’re pain feee at least that’s something xx

Bailey1981 profile image
Bailey1981

I also get pain all through the month not just on my period and I have a swollen stomach most days where I look 7 months pregnant

Romano1234 profile image
Romano1234

It’s comforting to know I’m not alone in feeling like this. I can’t tell you how many times I’ve sat in the doctors office crying saying I “don’t feel right”. It feels like constant labour pains (not in full swing) but painful enough to not be able to get comfortable even when lying down.

I was hoping a hysterectomy right solve the pain however it sounds like sometimes it doesn’t if there’s endo left or damage to closely located organs. It’s sad as there really is no quality of life living with this condition.

Romano1234 profile image
Romano1234

Do any of you have the really bad back ache? Like the lower back where it’s hard to bend or stand!?

Mountainwonder profile image
Mountainwonder in reply to Romano1234

Yes really bad lower back pain especially around time of period. I’d have two hot water bottles, one on my back and the other over my tummy 😔

Romano1234 profile image
Romano1234 in reply to Mountainwonder

Rubbish isn’t it. I generally feel like I’m in labour sometimes with the pain. Did you get the sciatic pain and weakness also?

Mountainwonder profile image
Mountainwonder in reply to Romano1234

Yes pain would radiate down my legs too. I’m sorry that you and others are also suffering with this terrible condition. It is totally rubbish! X

Romano1234 profile image
Romano1234

And also sciatic feel or weakness in the back and legs. I get shooting pains sometimes.

Lofty1589 profile image
Lofty1589

Hi, yes I have Adeno. I’m only 20 so I can’t fathom going down the hysterectomy route. I believe I have Endo elsewhere because even being in induced menopause isn’t helping me like it should. It’s an awful disease.

If it helps, if you were to have a hyster, removing only the uterus and not the ovaries means you wouldn’t go into menopause - it’s the ovaries that control that situation! X

Romano1234 profile image
Romano1234 in reply to Lofty1589

Thanks. What are your symptoms?

Kimple123 profile image
Kimple123

Just diagnosed after 3 years of searching! My periods are heavier mut my main symptom was like sitting on a tennis ball and the pain In hips and tailbone area. More recently I get that ache/stretch feeling right up right side of back. My uterus is enlarged on one side and doc says it’s prob sitting on nerve so this symptom is common. He’s trying me on mini pill to induce menopause but I’m real nervous about side effects. Although am balancing that with the thoughts of not having pain so...mmm

Romano1234 profile image
Romano1234 in reply to Kimple123

Bless you xx

Romano1234 profile image
Romano1234

Sounds like my exact symptoms! I’m on the pill that stops your periods and while that’s sorted the excess bleeding and clots out it’s made the pain worse for me I think. It worked for a while but I’ve been on it 2 plus years now.

Lou93 profile image
Lou93

Yes I have endo and adeno I often get ovary pains along with awful back pain, for years I suffered with painful heavy periods clots and leaking it was awful ever since I was 14 tried all sorts of pills implants coil everything,I was on the depo for 2 years that helped keep my period away and surgery last april but my symptoms have come back and worse now on Zodalex injections to go into menopause to try and help with my pain then hopefully a hysterectomy but that’s my choice, my consultant said to try Zodalex injections with hrt to see how I get on as when I have a hysterectomy I will have to be on hrt as I’m 27 at the moment.

Hope your pain isn’t too bad and hope you have some good pain relief at home if not ask for some from your gp xx

Romano1234 profile image
Romano1234 in reply to Lou93

Thanks. I’m 38 and done with having kids so although would rather not I’m ok with having my womb removed. It’s the back ache that’s the killer...like being in slow early labour sometimes and all month not just at period time. Sometimes I struggle to stand up straight as my back is that stuff and in pain. I hope you get some relieve also. It’s hard to know if a hysterectomy will help...if it’s adeno only then most probably however it seems if it’s adeno and endo and the endo is left untreated then you’ll still get pain!? Suppose everyone’s different!?

Lou93 profile image
Lou93 in reply to Romano1234

I think it’s a risk worth taking I’ve spoken to a few women who have had one and they are glad they’ve had it done but yes everyone is different, yes I get awful pains in ovaries and back like you say can’t hardly move sometimes because of stiff back, have they subjected you try zodalex before hysterectomy then? X

Kimple123 profile image
Kimple123 in reply to Romano1234

Hey. Yea the back ache is up right side and recently it’s more severe! I very rarely get relief. Hip ache and stiffness as you mention too.! Prob more than realised as Iv got used to it!! I feel like I’m 70 not 42! Healthy otherwise and active so v stressful when I’m not feeling so good! Il see how pill goes then. Only been on less than a week! I’d have a loved another child. Iv one son. So it’s getting mead around things!

Romano1234 profile image
Romano1234 in reply to Kimple123

Try it the pill helped me with heavy bleeding but not the backache. Just feels like you constantly need to stretch your back out or try to crack it. Weird to think it causes that pain.

Romano1234 profile image
Romano1234

Really, no they’ve not done anything yet apart from tried the coil and pill. I was booked in for a laparoscopy but then it was cancelled due to Covid. However, if adeno is seen on a scan do they need to do one? I don’t know? What the Zodalax? X

Lou93 profile image
Lou93 in reply to Romano1234

They might suggest it and if you were booked in for one the hopefully it won’t be too long, think they can get a better idea when they look inside, as when they looked inside for me they knew how bad the adeno and endo was. The zodalex is and injection I have once a month for three months then every 12 week to put me into menopause temporarily to shut ovaries down and give me some relief from the pain I hope, also take hrt alongside injections, I would try and speak with your gynaecologist again to see what options are open to you x

Romano1234 profile image
Romano1234

Thanks I’ll ask I’m speaking to her this week. I’ll let you know how I get on x

Romano1234 profile image
Romano1234

Hi ladies...I’ve had another ultrasound and the doctors confirmed they think it’s definitely adenomyosis. Also they confirmed that my womb is tilted back (so flopped back near my spine) instead of in an upright or forward position. I asked the doctor if this could be why I get a lot of pain in my back and he said most probably. He said my womb was 7cm although I don’t know whether that’s length or weight, as I forgot to ask.....Just wondering if any of the ladies with the backache have a tilted womb like mine?

Kimple123 profile image
Kimple123 in reply to Romano1234

Yes I think mine is tilted. Plus enlarged one one side which pushes against my colon and the nerve that causes havoc with my back. Iv a history of depression and anxiety a few years ago after my now 7 yr old was born. Iv been getting anxiety sort of attacks and wondering if it’s related to my starting the mini pill. I’m getting myself in a right twist about whether it’s gonna get worse!

Romano1234 profile image
Romano1234

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