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 🥺

I’m a few days into taking the progesterone only pill , I’m praying it stops the awful bleeding.

Ashemark - I'm sorry to hear you are suffering. I agree with the knowing what to wear, as I look 4-5 months pregnant. It's just so debilitating on so many levels. Hopefully, the weather is cooling down a bit and you'll feel more comfortable 🙏
Reugny - will do x
Toomany - let us know how you get on. I really hope it helps x

Is there anyone on here that’s done IVF with adenomyosis? I’ve just had my third transfer fail :(

Loz - I'm sorry I don't have any experience of IVF. I'm really sorry to hear your news :( Hopefully someone will be along shortly who does xx

How are we all doing? I've just had really bad leg pains this week. Does anyone else get them?

Hi, I was diagnosed with Adeno a few years ago. I look 5/6 months pregnant, this month I have bled for three weeks and struggle with back, tummy, leg pain. It's the flooding that's the worst, never knowing when I'm going to get a 'whoosh.' Consultant was very dismissive as I didn't want a coil (for personal reasons - but no questions were asked why) and had a very traumatic biopsy without any pain relief. It took two doctors and the consultant over an hour, I nearly fainted it was so painful. Naga Munchetty did an interview about Adeno and how women are treated so differently for a chronic condition and has been treated as though she is 'hysterical' and not taken seriously for the impact and pain! Also how these invasive procedures would be under GA or minimal pain relief and sedation for male equivalent for men.

Have prescriptions for tranexamic acid and mefenamic acid, which have minimal impact tbh. Have been sent back to GP, who actually was very good and with the help of diazepam am going to try the coil. At this point I feel I would do anything to give me some quality of life. If I could afford it I would go private for a hysterectomy. Sad that we're fobbed off, if we were men this wouldn't happen!

I don't know what the answer is but am sad so many of us are going through this

Hi, I had a hysteroscopy today , which wasn’t too pleasant they also removed a polyp .

I did, I used to have achy/cramps pains down to me knees.

I am 6 weeks post op from my hysterectomy and my mind is blown every day with how much pain I was in every day before

No panic. I understand exactly what you're going through. It's awful 🥹 The embarrassment of looking pregnant. The pain and other debilitating symptoms.
I have a coil and it has helped. Ask for Lidocaine gel when you have it and you won't feel any pain.
I can believe you have been declined a hysterectomy. Surely it is your right to have one? Have you contacted PALS?

Did you get any results? I hope your not too uncomfortable after x

Hi there - I was very recently diagnosed kind of my accident: I had a kidney infection and was in the hospital overnight on an iv. After the infection cleared I still had pelvic pain so was sent for a pelvic scan: hey presto adenomyosis! I already have the mirena for heavy periods so ‘no further action’ apparently….
But I am so angry about having been fobbed off for years - the flooding, the pain, the years of anemia, taking ages to conceive, 2 miscarriages. And only now I know in all probability why!
I started a low dose of HRT a few months ago - and now I have questions! I need to go back to my gp and ask to be referred to someone: but after my recent experiences I just despair.

@Fiflaboeuf it took me 3 decades to be diagnosed.

Please complete the survey as it may help younger women not suffer.

www.gov.uk/government/news/landmark-survey-seeks-womens-views-on-reproductive-health

Also I was instructed by the consultant to have a mirena coil after having years of problems with the pill and mini pill, and being advised not to use any progesterone contraception. The registrar I saw next agreed that I should not have one and manage with tranexamic acid though increase the dose. Then if that doesn't work to have an uterine ablation (which means you can't have any more children). I'm lucky I mostly WFH at the moment.

Depending where you are the waiting lists can be long but you may suddenly be seen. I waited 9 months then got a phone call to come in 5 days later. Then waited 6 weeks for my next appointment and was asked to come in the next morning after a phone call the previous afternoon.

Thanks @Reugny - survey done!

Fifla - it's awful isn't it. I have had so many diagnosis over the past 2 years. The main issue is the lack of training/awareness of this condition. I too have a Mirena, which has helped a bit but they are talking about me having 2? Apparently the progesterone in 1 isn't enough. I just want a hysterectomy.
I found HRT made it flare up big time. Apparently it is oestrogen dependent, so it makes sense that it aggrevates it.
I'm really struggling with bowel issues. Mainly constipation. I've tried everything 😢

Oh man. That sucks @Redandpinkstripes 😥 two mirenas?? I have times when I think I just wish they would rip out my womb and my issues don’t sound as bad as yours.
The bowel issues: interesting as I’ve had constipation on and off for years….

Hi all

I've recently been diagnosed with adenomyosis after an internal and abdominal ultrasound. This was after going to the GP numerous times with horrific pain & bleeding.

I've been on the pill on & off for many, many years, had depo from August 2021 to August 2022 then one single injection in March this year (felt pressured by the GP).

I thought my cycle was settling itself after all this over the last 2 months but now I'm a week late & definitely not pregnant, which is ironic as myself & my partner have decided to start trying in October 🤦🏻‍♀️
I've had a week of cramps & now I'm getting the pains down to my knees that I always get so I'm hoping in the next few weeks that I will come on.

That's the thing. I know the solution but it's probably a 2 Yr wait to have a hysterectomy 😢 It causes constipation due to the enlarged uterus pressing and causing pressure on the bowel/bladder. I have bladder issues too.

Welcome to the group Narswhal. I'm sorry to hear you've been diagnosed with Adenomyosis. Good luck with TTC too 🙏
I always found my symptoms get worse before I come on, so fingers crossed you are xx

You should look at joining Beneden, they'll do it after 6 months if you are still waiting on the NHS

My daughter was diagnosed with it just after her 21st birthday last year. She had been suffering since the age of 14 when her periods started. Clotting, pain, fainting, bloating etc. She's gone through mefenamic acid which did nothing, the mini pill which didn't suit her and caused depression, tranexamic acid which caused side effects and she had to come off it straight away and finally she has had a coil fitted which is currently making things bearable for her.

She has a lot of years to go before they will even consider anything further.

I've heard mixed reviews about Benedan, as I've been seriously considering them 🙏 I'd love to hear people's experience of using them!

I get very bad leg pains yes

I'm so glad there is a thread on this. It makes me feel so much better to see so many others the same. I'm struggling with pain, bowel issues and reflux. They are about to try temporary menopause with me. Has anyone done that?

Regarding pain, I can't use NSAIDS but I've found heat pads and tens machine very effective. I do a lot of walking too on the days when I'm up to it.

Pieceofpasta - welcome to the group.
I have been on Prostap as they originally thought I had Fibroids. It did help initially but I struggled with the menopausal synptoms, so was given HRT. It made my symptoms unbearable. Just something to bear in mind. It was the HRT that made things worse.
I too struggle with nsaids, although do take Naproxen when it's really bad. I find effervescent paracetamol better, for some reason.
Good luck 🙏 X

Thank you. Is Prostap the temporary menopause injection? The consultant said it would increase the pain in the first month. I'm only going to do 3 months to test it.