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 have adenomyosis.

Things that I have tried so far:

1. A succession of Mirena coils, which all dislodged / migrated. The current one is embedded into the muscle wall of the womb.
2. Two rounds of zoladex (each for six months), which stopped the bleeding and improved the pain by 80%. I didn't take any HRT with it as I didn't want to set the adenomyosis off again.

My gynaecologist has suggested an endometrial ablation, but that is likely to worsen the adenomyosis in the long term and cause more pain, so I'm not keen.

He doesn't want to give me a hysterectomy; I'm likely to go into a natural menopause within the next few years and that will resolve the situation.

After the best part of a decade of chronic pain, severe anaemia and infertility, I finally had my hysterectomy at the start of August and evicted a uterus riddled with adenomyosis

It was so big (approx the size of a 28 week pregnancy) the surgeon couldn’t believe I had just been living with the pain. For context, I came out having just had major surgery, and was in significantly less pain than I was before I went to theatre. I went home the following day and only took painkillers for two days (I assume my pain threshold is pretty high these days haha!)

I was fobbed off by so many doctors, both NHS and Private. Told that I was making a fuss about nothing, that ‘periods hurt’, that I should just wait for menopause, that other women deal with it, that I should seek mental health support, that it would get better when I had a baby, that it couldn’t possibly hurt enough to make me pass out or vomit, to just take some ibuprofen, that tests weren’t actually needed because it’s just a period, that I’d be just fine if I lost weight……the amount of gaslighting from the medical profession honestly made me question whether it was all in my head

After 10 years, the 9th gynae I saw took me seriously

Welcome Ashemark and Newname.
Ashemark - have you been given the option of hysterectomy? My mum didn't start her menopause until 56.
I couldn't spend 8 years like this :(
Newname - how are you feeling after your hysterectomy? I'm sorry you have had such a long journey to get there. I totally understand how you feel about gaslighting. That's how I feel. The mental health side of this condition is not helped by not believed!

I have adenomyosis and severe endometriosis. I am in pretty significant pain most of the time now.

I was dismissed by doctors for years and years with comments like "period pain is normal, you may have a low pain threshold". I finally found a decent specialist a couple of years ago who has done a great job at managing the endometriosis with surgery. As I want to have more children, the adenomyosis has been left untreated for now.

I have no advice on remedies as nothing really works for me. I'm about 20 years away from menopause so likely to need some sort of treatment, but the thought of a hysterectomy terrifies me.

Thank you for setting up the thread!

Welcome Goingthere. I'm sorry you have had such an awful journey to diagnosis. It seems to be the "norm" that women are gaslighted into thinking it's okay to suffer the way we do.
The one thing that has really helped me is a plug in heat pad. I got mine from Argos. It is better than any pain relief. I also use Paracetamol every 4 hours and Naproxen 500mg twice a day. When it's really bad Co-dydramol helps! I am also trying to eat healthier and have started intermittent fasting.
One of the options is to have 2 mirena coils, as apparently one doesn't deliver enough Progesterone?

I actually feel brilliant! I have had very little pain at all, so my recovery is mainly just letting things settle, and resting enough to let my body heal.

For context I was on mefenamic acid 3 x a day, tranexamic Acid 3x a day, and 2 30/500mg cocodamol 3x a day during my period and that got me to the point where I could just about function but was still in severe pain (I couldn't risk leaving the house due to flooding and was in too much pain and on too many meds to drive). I basically lived on cocodamol most of the time I wasn't on my period. Oh and I was on the mini pill at the same time

I have had multiple iron infusions over the years and it barely kept my haemoglobin levels in the 90s, so they gave me a blood transfusion before surgery and I now have normal iron levels so I have energy

If anything I am so over the moon not to be in severe pain, or planning stuff around the potential for pain and flooding, that I am finding the post surgery limitations a bit frustrating - I just want to get out and DO stuff. It's weird, when you are in it you know that it's controlling your life and you are just existing, it's not until afterwards you realise just how bad that is

My sister-in-law had this, she was in agony for years. A hysterectomy has genuinely changed her life.

Hi , I’m 50 and was diagnosed with ademyonosis and an ovarian cyst , via ultrasound in June . My main issues have been endless spotting and over frequent periods .

Glad I found this group! I developed this after my last baby, now aged 2. Ultrasound diagnosis confirmed it. I was flooding for 7 days a month but thought it was due to breastfeeding (though it improved a little when I did stop in December). Fortunately my GP took me seriously from the start and I quickly got a referral. I also looked 6 months pregnant, still do a bit!

GP first prescribed Qlaira which was awful. Anxiety and insomnia inducing plus more spotting. Consultant took biopsy to rule out anything else.

Really suffered but have found what works for me and it's much improvdd. Zero pain now, regular and light cycle.

Exercise. NAC (600mg daily). Ibuprofen on days 1 to 3. And 200mg body identical progesterone (pv rather than oral) from day 1 to ovulation.

Am 44 and feel great again! I do try to rest on days 1-3 if I can, hard with three little kids.

Newname - I'm so happy for you. I totally understand what you mean. When I gave brief periods of no pain, it is so weird as you kind of get used to it. It must be amazing to have your life back and gives me hope :)
Heidi - great news about you sil and how much better she is!
Toomany - I was like that, until I had the Mirena coil.
Living magic - That's great that you have found a way that works for you. I am trying to be healthier. I just feel so exhausted all of the time. I am really bloated too. I look about 5 months pregnant

How are we all? I hope you all had a lovely Bank Holiday.
How many of you suffer with bowel issues? I think this is what I have found hardest. The constant feeling of bloating and going between constipation and urgency. It has really knocked my confidence as I have had bladder issues too.

My uterus is the size of a 4-5 month pregnancy, so that affects my bladder somewhat.

My bowels are OK at the moment, but when the adenomyosis flares up I get pain during and immediately after bowel movements.

When I am on zoladex, the pain is rarely an issue.
When I am not on zoladex, I manage the pain with walking, heat, ibuprofen and paracetamol (mefenamic acid doesn't agree with me).

Ashemark. That's good that the Zoladex helped. It did for me until they added hrt, as I was having terrible side effects. Then it all flared up.

Thanks for starting @Redandpinkstripes !

I found out I have adenomyosis (endo on my bowels and ovaries and a massive amount of scar tissue everywhere else) after a laparoscopy last month, and my uterus is severely misshapen.

I was told this while I was still off my face on general anaesthetic and morphine so didn't process it properly. I've asked for an appointment with my GP (14th September, sigh) where I will, yet again, ask for a hysterectomy. I've lost count of the amount of appointments I've had, the amount of times I've asked, the amount of times I've described the constant pain.

Joris - I'm sorry to hear what you are going through. Like you, I just want a hysterectomy! It's such a long road to get it though 🥺

Hi , I saw the gynaecology consultant on Thursday, I refused a coil , but I have been put on tranxemic acid, the progesterone only pill , and iron tablets. A blood test showed I have severely low iron I am so fed up with adenomyosis.

Toomany - I am a similar age to you. Have they suggested a hysterectomy?
I know what you mean. It is so debilitating. I do hope you get some relief from the treatment given 🙏

@Redandpinkstripes , sadly I asked about a hysterectomy, and the consultant said they wouldn’t do a hysterectomy, because my periods will stop soon naturally!

Toomany - that us awful. How do they know when this will happen. Maybe ask to see another consultant or contact PALS?

So glad to see this! I have had adenomyosis for years. It was found after I was admitted due to pain and a scan carried out.

I have had an ablation which stopped the flooding. I use naproxen to manage my flare ups. Occasionally I need an admission to hospital.

I have been refused a hysterectomy as I am overweight. I'm suffering depression so weight loss is a struggle. I know what I need to do but I can't make myself do it.

Plonky - I'm sorry to hear you are suffering. The mirena has really helped as I don't bleed so no more heavy periods.
It is so hard to motivate yourself when you are struggling with mental health. I hope you are getting support.
I should exercise but it can exacerbate pain, so it's a vicious circle. It's really hard 😪

Just checking in to see how everyone is. I've had a relatively pain free week, so I'll take that!

I am doing OK pain-wise but have been feeling quite dizzy when I stand up, sometimes to the point of nearly fainting.

I find it much harder to cope with adenomyosis in the heat (difficult to use heat packs, feel even more bloated, have to wear dark colours on my lower half however hot it is) and I'm looking forward to it getting cooler.

Please can you all make sure you complete this survey and make it clear in your answer about conditions if you only have adenomyosis. (If you have endo as well you will likely be grouped under endometriosis.)

Also leave a comment about why it's different from endo, how long it took you to be diagnosed, how you have been dismissed by doctors, etc.

The info about why the government is doing it is here:
www.gov.uk/government/news/landmark-survey-seeks-womens-views-on-reproductive-health

Direct survey link is here:
https://online1.snapsurveys.com/interview/3e9e0d85-378d-40dd-a701-f353e02fbac1

I do expect the survey results to be shelved as the Tory government had a habit of doing that, but if none of us answers this stuff other suffers never have a chance.