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 🥺

Saw the GP again today. Fobbed off yet again with try the mini pill again and we may look at antidepressants for possible PMDD. No more scans, blood tests nothing to see why my periods are so heavy and painful. Literally been home for 3 days and the pain is like I'm in labour. Honestly I could cry. No one believes me or wants to help.

Have you thought about going private for a one off consult?

I have looked into it but it's £250 not including any blood tests or scans for the private hospital near us which is a lot of money for me.

Hi everyone, and I don't know where to start but to say that I have just had an ultrasounds and have 2 small uterine cysts and "Adenomyosis likely". I am 37 and previously had no issues at all, all of my multiple womb ultrasounds were absolutely perfect (and I had a few since going through IVF 2019-2022).

I have just seen the GP and was hoping to feel better after seeing them. Whilst they said it is encouraging that the sonographer isnt raising alarms, they can never be 100% sure in medicine unless they take biopsy. So here I am, super scared.

I have been referred to gynea but i know waiting lists in our area are awful, but i was told they hope i wont have to wait too long.

I have bloating and look like 6 months pregnant always, the heaviness, and some pain but not much. My biggest issue is the fatigue. Not sure if anyone else is experiencing awful fatigue with this? (although mine could also be due to not sleeping for 16 months now since the birth of my child!).

Thank you all and big hugs.

Just wanted to jump on here and ask if any of you have had womb biopsies? I finally saw a gynaecologist today and he said he wants me to have scans and a biopsy within the next 4-6 weeks to see what's going on.
I'm relieved to finally being taken seriously but also nervous and slightly scared of how painful the procedure is. He said to take paracetamol before and it's like a smear but I'm worried it's more painful than that or am I being silly?
Also is it normal to want scans and biopsies done so quickly? I thought waiting lists were months long unless he's worried about something he's not said so I don't worry unnecessarily.

@abbs1 I have had a biopsy. It was pretty painful in the moment but didn't last. The set up was similar to a smear, legs akimbo etc. it feels very much like a bit of your insides is being cut off so you'll feel pressure and then stinging. I had tears in my eyes and had to squirm about a bit. But once it was done the pain didn't last for me. I had an internal ultrasound at the same time. It was a fun afternoon 😣. I had a wee chuckle at your male doctor telling you that it "was like a smear" - presuming he is not a trans man I think it's safe to say he hasn't experienced either a smear or an internal biopsy!!

My biopsy was done very quickly after my first approach to my GP. It's good that they're doing it quickly. I know how anxiety provoking it all is but the quicker they do it the better for you regardless of what they do or don't find.

@Wobblyheart I'm so sorry I missed your post when you first posted. Have you seen the gynaecologist yet? Where are the cysts? It's my understanding that one of the side effects of IVF can be ovarian cysts. Also how have your periods been. If they are really heavy could your exhaustion be down to low iron? I really hope you're feeling better. [Flowers]

Oh gosh. I've got to have an internal ultrasound same time as well. I have a retroverted womb so internal scans are painful as it is so a biopsy is scaring me.
My husband said won't you be sedated for it and I said no. Just told to take paracetamol or ibuprofen before. 🙈 were you in hospital all day? He told me it's a day case.

Haha! Same. I asked if it was like labour and he said not as bad but obviously he's not given birth before.

Thankyou for replying. Its taken me such a long time to get to this point I'm still like have I finally been listened to and not fobbed off! It's only taken nearly 15yrs 🤦‍♀️

Hi all. Hoping I can join. Just found out I have adenomyosis . I also have endometriosis but I have known that for a few years. It explains perhaps a bit more some of the pain and the ridiculously heavy bleeding.

My main fight currently is my low iron (and heart / circulation problems linked to it) and GP refusal to do anything other than iron tablets . I firmly believe I need an iron transfusion - if anyone has managed this, please let me know how!

Also TTC but I think I'm scraping the barrel with a very low ovarian reserve, endo, adenomyosis and just about to hit 40...

Hello - joining the chat. I've been diagnosed for a good few years. Heavy periods, peri, adhd, depression and anxiety. Under chronic stress atm. Have had a number of iron infusions and recent blood results have included
positive EBV for all tests,
Hemocrit high
Neutrophils up
EBV all positive
ALT 67
Calcium low out of range
Iron high out of range
MCHC low out of range

I have had a hysteroscopy and polyp removed and d&c snd so far ok. I have huge reactions to things and very sensitive and skin flares at nothing... I'm really thinking. Now I want a hysterectomy as I cannot cope with how I feel.

I'm stressed by this and frightened. Can anyone please help explain what this means??

My biopsy was horrific. I had a base vagal response which meant that I started sweating profusely tearing my clothes off, wanting to be sick and pass out. It was awful: only happened AFTER they removed it - the actual biopsy was fine.

Vaso vagal

Iron transfusion really helped but I had too much and got iron flu. The haematologist said that although my bloods look ok I have iron deficiency anaemia which means that my body isn't getting it - no doubt it's all going into my womb! I had the most horrific period after it - couldn't leave house for a few days so I think that explains it. And if I keep my womb he said we just need to work out pattern and have every four months or whatever it is. At least I feel like someone is looking after me now. I've been wildly trying hrt and so on which has just made me more anxious

Oh no that's awful! How long did you feel like that for? I'm dreading mine so much.

I’ve had a biopsy and it was fine, not uncomfortable or painful at all. So sorry for those who had an uncomfortable experience, it sounds dreadful!

If anyone has one coming up, it can go well too. I had an MRI recently (different issue) and got through with box breathing (google it!) and tulsi tea beforehand. Try those plus pain relief beforehand.

I have found taking NAC has really helped, I stopped and my periods/adenonyosis got much worse! Trial and error so going back on it.

I (separately) had a break from vaginal progesterone and that has made it worse too. 3 weeks of constant bleeding!

Still finding plenty of exercise helps.

I had visitors over Easter and feasted/ate more than I do at Christmas and that had made the bloating and pain much worse. Back to my usual now (real food, not too much, mostly plants, plenty of protein) and it’s like a miracle in terms of the adenomyosis and my energy levels.

Ferritin is very low but started Hema Plex and will be retested in 3 months. Meeting my GP next week for a review either way.

Update on me, full hysterectomy was agreed and in the meantime they said they would induce the menopause via zoladex. Bleeding stopped, no pain. Happy me. Unfortunately the menopause caused me to gain weight. This put me over the BMI threshold for Benenden and so I stopped the zoladex last November as the weight wasn't coming off. My periods have not yet returned but my god I'm in pain. I'm back to wanting to cut my own womb out. The pressure and pain there and coupled with the lower back ache is awful. My weight is still not changing despite me trying my bloody hardest. I successfully lost 3 stone pre zoladex.
I feel trapped in a vicious cycle. Zoladex amazing but weight gain. If I don't get this weight back off no hysterectomy. No matter what I'm trying the weight is not shifting. I'm diabetic too so on meds that can cause more weight to go on.
I'm so desperate. I'm sick to death of the pain. I want my life back.
Any ideas, pearls of wisdom from you lovely ladies re losing weight and dealing with the agony in the meantime? X

@ButtonMoonMrsSpoon oh that's ahitty. What an awful situation to be in you poor thing :(

I have basically struggled with weight for decades. I did have some success with weight watchers but that deteriorated.

Since Jan I've been doing 16:8 fasting - it has been pretty successful. It's also reduced bloating quite a lot - because my stomach is less full which has helped pain. It doesn't have to be that extreme fasting wise and I don't know how/if that would work with diabetes? Do you take regular pain medication?

@ButtonMoonMrsSpoon so sorry to hear that. I’ve been the Human Being Diet raved about on here. I tried it for a few weeks and it’s really good. Must try again, I’ve started storing fat around the middle.

Thanks ladies, I'll look some of these up. I've just got to do it. I'm desperate for this hysterectomy. Got a diabetic review in a week or so and will see if there is anything I can take that doesn't add weight. I cannot wait to be womb free. My insides feel so heavy and the only relief is when I lay down. I'm exhausted from constant pain x

Hi all, looks like I'm joining the hysterectomy club. I'm struggling with the pain constantly now. I can't work any more. Just out of interest, how many women end up with hysterectomy? Does anyone have any luck with the none surgical routes?

@pieceofpasta Hi, the same here likely. Adenomyosis and a polyp in my case. I am having an MRI in June so they have better details and can take a decision if hysteroscopy + mirena or to go for hysterectomy.

I wish that I'd known at the beginning that the mirena, etc were only temporary solutions. I've done them all. Mini pill, mirena and zolodex. I think they do push them as solutions to delay putting you on the waiting list. I'd love to see some research of how many women have success with these non surgical routes.

Thank you @pieceofpasta , that is what worries me too. I had my MRI on Tuesday and the follow up appointment next week so I guess I just have to wait. Really helpful to know your experience. I have a friend who has adenomyosis without having any issues and I guess I had too for some time but recently it is (whatever the exact cause) getting progressively worse. Will that stabilise, will that continue? I do not know. I know I can’t manage my daily tasks right now and that is scary having 2 kids and caring responsibilities. Let’s see next week with the results. Hopefully it will help the decision and hoping there is a solution to whatever is happening to me right now.

Hi everyone. I started this support thread originally but haven't posted as I initially was told I had fibroids and nothing else. I had a hysterectomy 4 months ago. I was diagnosed with Adenomyosis. 2 weeks ago I was diagnosed with Endometriosis. Heart broken doesn't come close to how I'm feeling right now :( xx