Adenomyosis support thread

[Redandpinkstripes]

I posted this week about there being a high possibility I have Adenomyosis after struggling for many years. Another poster came up with the idea of a support thread, which I thought was a great idea.
I have been in severe pelvic pain, that worsens significantly before my period. I have had a few episodes where the pain has been so bad, I've almost passed out. I've had the Mirena coil, which has helped a bit. I was put on Prostap, which was brutal as they thought it was fibroids causing it. They then added HRT, which made my symptoms 100 times worse. I was signed off of work for a month. The pain was so bad I ended up in a and e. Even Morphine didn't touch the pain. After stopping the HRT, the pain has reduced but I still have really bad days. It affects my bowel and bladder too.
The pain is deep in my pelvis and left ovarian pain that radiates to the back.
It would be great to talk to others that understand, as there is so little out there. It doesn't just affect you physically but mentally as well 🥺

@pieceofpasta I had two rounds (6 months each) of zoladex (equivalent injection).
I found that the adenomyosis symptoms worsened initially in week 2-3 of the first month (the ovaries trying to compensate and briefly releasing more hormones). Then after that there was no bleeding and 90% less pain.
Obviously there were some menopause symptoms, but for me these were preferable to out-of-control adenomyosis.

Pieceofpasta - it is. You can either have Prostap or Zoladex. The problem was no one explainer it properly to me and I had awful menopausal symptoms quite soon after starting. They added in HRT, which made my symptoms so much worse. The actual injection worked, it was the HRT that made it worse :(

Can I join? I've recently been diagnosed and struggling. Also have a dermoid ovarian cyst and suspected endometriosis. The first available appointment in my area to see a gynaecologist just for an initial consultation is 11th December 😞

I had Adenomyosis and endometriosis. Years of heavy periods, anaemia and chronic pain.

It got so bad around the age of 45 that I could no longer function.

Tried the pill, more hormone, Mirena...nothing worked.

In the end I had a partial hysterectomy, recovered well and finally got my life back!

It was really a struggle to get a proper diagnosis in the first place.

It really is a condition that has a major impact on quality of life...

Well I came on yesterday so I'm officially in my first cycle TTC🤞🏻

I've started tranexamic acid tablets today so hopefully my period won't be as long as it can but usually 10+ days or as heavy.
The tablets are vile & I felt so so sick at one point today which I think was caused by them 😫

PeachF. Of course, you are very welcome. I am sorry you are struggling so much. Gynae wait times are horrendous at the moment. Is your gp supportive? X

Startingagain. Thank you for sharing. It gives me hope. The sad thing is I know I need a hysterectomy but the wait times are about 2 years. I need to win the lottery! I don't think men would be left to suffer like we are 🥹

Narwhal - I have everything crossed for you and hope the tablets become more bearable 🙏

Hi, hope it's okay for me to join in!

Recently diagnosed with adenomyosis (only). I am in my early 30s and it's come as a bit of a surprise as it wasn't something I considered might be the cause of my symptoms - I originally went to the doctors over mid cycle bleeding/bleeding after sex, then eventually had an internal and external scan showing adenomyosis. I think it is hard to gauge if your level of pain is out of the ordinary when it comes to periods (I suppose mine are heavy and painful, but your own normal 'is your normal'...? So I think this can often probably go missed in a lot of women! Never mind that symptoms can easily be dismissed as normal when you go to the GP too, I imagine).

Completed the survey. I think it is really hard to find information on adeno alone. Currently waiting for a referral to a gynaecologist, but who knows how long that might be or what they may suggest. I feel like I am in limbo as many options to alleviate symptoms aren't really suitable for me, and some of what you read online, particularly research can be concerning when it comes to fertility but trying to keep positive - I just wish there was clearer guidance like there is for some conditions.

I wish you all well and thank you for creating this support thread - I think it's really important that this is talked about more!!

Thank you. I'll bear that in mind. If it's bad I'll have to stop.

Thank you. This is what they are hoping for I think.

Hi Kittykat - welcome to the group. I do hope you don't have to wait too long for gynae 🙏
Unfortunately, there isn't a lot out there on this condition.
I have had multiple diagnosis and it is so frustrating as I know a hysterectomy will sort it but looking at a 2 year wait.
I would recommend to anyone looking for brilliant information on Adenomyosis to follow Rebecca Mallick on Instagram. She is a gynaecologist who specialises in Adenomyosis.

Thanks Redandpinkstripes!

I hope you get a date soon!

Ooo, her instagram looks great - theadenogang also is great and seems like a good source of info too

Hi,

I wanted to ask if adenomyosis can cause free fluid in the pelvis? My recent ultrasound found free fluid and a simple cyst on left ovary. I was diagnosed with adenomyosis a couple of years back. I am recently getting worsening pelvic pain and lower back pain and pain when urinating. I was told when I got the adenomyosis diagnosis that I most likely also have endometriosis, as they usually accompany each other.

I saw the nurse yesterday. She was great and a fellow adeno sufferer. She told me pretty much that the injection might give me a bit of time but that ultimately I will probably need a hysterectomy. She said hysterectomy worked and she was well now. I was so grateful to her to for talking to me honestly. She said this isn't a disease that can be treated that will go away with treatment (other than hysterectomy). So I'm going to agree to go on the waiting list next time the consultant sees me.

You probably have endo as well.

You need an MRI or laparoscopy with either done by a relevant specialist to check if you have endo. (Most MRIs or laparoscopies done on the NHS seem to be done by generalists.)

Ultrasounds are normally just of the uterus and ovaries, there as endo can be anywhere in the pelvic region and even worse in other parts of the body.

Pieceofpasta - that's good news that you have a plan and are on the list. I'm can't wait to have mine done as know I will get my life back. Fingers crossed you don't have to wait too long 🙏X

I'm sorry I'm not sure about the free fluid but the conditions often go hand in hand. I hope you get some answers soon 🙏 X

I hope everyone is as well as can be expected. I've had a really bad week, this week 😪 The pain has really flared and is causing a lot of pressure in my abdomen and pains down my leg. I'm also having a lot of bladder/bowel issues. It doesn't just effect you physically but mentally too. I feel like I'm constantly being gas lighted and that I'm exaggerating my symptoms. I just can't see an end to it right now. Sorry for the moan but just needed to vent a little xx

Hope you get out of the pain flare soon.

I'm exhausted, been a manic week at work but this weekend is the weekend we start TTC so I'm keeping fingers crossed (although it's highly unlikely) that we conceive first time.

On a positive, the tranexamic acid I've started has shortened my period to a normal length, so that's good

@Redandpinkstripes I hope the pain calms down soon.

Since stopping the zoladex in June, my adenomyosis (and endometriosis?) pain has gradually started returning, so subtly that I didn't overtly notice it happening at first, but it has now reached the threshold of bothersome. Also effects on bladder and bowels have stepped up a bit. No bleeding yet which is something.

I am still under the care of the gynaecologist but have been putting off booking a review. I haven't had any massive sudden bleeds this year (which is the only symptom he seems to take notice of). I don't want an endometrial ablation and they won't give me a hysterectomy, so I think the unspoken plan is to wait for natural menopause.

Thanks so much, I just can't see an end to it all. I'm so glad the transexamic acid is helping!
Good luck with ttc. I have everything crossed for you 🙏 X

Thank you. It has hit me hard, as I know how bad my flares can be and nothing works pain wise 🥹
I too had a similar treatment - Prostap, which was stopped in March. I don't bleed as such, but spot throughout the month. The mirena coil has helped with that.
It's good that you can always book a review with gynae if things worsen. I have a follow up soon and I am going to push for a hysterectomy. I am also at menopause age (48) but am more peri than menopause and my mum didn't go through hers until she was 56!! I can't believe they won't give you a hysterectomy, as that is the only thing that cures Adenomyosis X

Can anyone offer any insight into zoladex symptoms? I had it on Wednesday. On Thursday I started feeling dizzy and foggy. Like being on a boat. Quite frightening. It's continued. I've been in for a checkup. No blood pressure issue. My friend thinks I might need to start the hrt early as she says it's a menopause symptom. I'm not supposed to start the hrt for a month. Don't know what to do. I don't know how I'm going to walk my child to school in the morning safely. I need this to go away.

I do feel for you. Are you able to do things to ease the pain and the bowel issues? I get the same pains as this (and the same gaslighting). Though advice from friends I'm using probiotics to help with bowel issues and I use rechargeable heat pads throughout the day. They are like a belt with a heated section. They are the best thing I've found. I also use a tens machine but I find the heat pads, especially on my lower back the most effective thing. They even reduce the leg pain. It was about £20 and charges via USB. It lasts 2-3 hours.