Adenomyosis struggle

[Taikaei]

Hi everyone,

I’m new here and I really need support as the specialists are throwing my mental health to the bin, in particular -ironically- gynaecologists.

I’ve been struggling with heavy pelvic and abdominal pain for like 7 years or more now, but even before I don’t remember ever having to not deal with a fair amount of pain.

When the pain however stopped me from walking and moving freely, sleep is impossible and my belly can increase up to 3 sizes and go back like a balloon I tried to search for help.

Gp and specialists said to me all sort of things, sometimes borderline insults and tried to tell me that ovaries cause no such pain.

Tired of all this I spent my own money (with struggle) to have an MRI which showed an enlarged uterus, intramural fibroids everywhere and a large 6cm pedunculate fibroid on the left side pushing my uterus in the right. The private gynaecologist diagnose was adenomyosis. Weirdly he also implied that “most women with adenomyosis have no pain so I should check somewhere else”.

The Gyno in the NHS hospital I’ve been referred to, didn’t even want to see the MRI, but they finally booked a laparoscopy to “see what’s wrong”.

Done laparoscopy, they did not remove the big external fibroid, stating that it cannot be the cause of my pain and sent me to an orthopaedic for the legs.

I’ve been now to 3 different orthopaedic/physiotherapist and I got another MRI that showed I have no issue with muscles/bones/nerves but the fibroid seems to be pushing on some nerves causing me pain.

They prescribed me amytryptilin for nerve pain but I would like something that helps me sort the issue.

To date, the gynaecologist still insist what I have does not cause any leg pain or problem to legs or the bloating I have. I feel tired for fighting to get my symptoms validated and sometimes doubt myself.

I suppose I just wanted to share this and know that my symptoms are real, because I am so tired of being dismissed and gaslighted.

Thanks even just for reading

[eunha]

That is so ridiculous to say it doesn't cause pain! I'm so sorry you have had to listen to that nonsense ❤️‍🩹❤️‍🩹❤️‍🩹 It's definitely not in your head!!

I've been there 🫂 lots of doc appointments left crying. The self doubt really gets to you. Don't give up 🩵 Forget anyone that tells you that nonsense and keep looking until you find a doctor that actually has some empathy and isn't just blowing you off to hide the fact that they just don't have the skill to treat you.

Yeah, there might be other issues going on too. I had a whole bunch of issues piling on top of each other with a whole tangled mess of unidentifiable symptoms (sibo, mcad, spontaneous csf leak, autoimmune) Chronic fatigue, pain pain pain, bloating, inflammation, excessive belching, cramps down into my legs, just to name a few. But my tests never showed much. And even my lap didn't show much, yet I am so glad I got my hysterectomy last year. To not have the intense and excessive pain regularly triggering my other conditions to flare up is such a relief, and I feel its helped by giving my body the break it needed to work on its other issues. (That and learning how to manage my mcad/mcas with benadryl) My condition has been slowly improving. Just to have my tummy flat for the first time in years felt amazing and I realized how even tho I've lost a little weight now, how I was actually underweight and malnourished with so much bloating and inflammation hiding that. Now I feel like Im at a healthy weight finally and I don't struggle to eat and feel starving all the time. And I finally don't walk around most of the month holding my lower abdomen in pain. My sis and I still have what seems like some endo pains sometimes, what maybe got missed because it just is so difficult to see and identify really, but we joke that we took away its power. It can try to get upset but theres no more giant muscle it can use to debilitate us anymore.

So please don't distrust yourself 🩵 I had my sister helping me to push through with it bc I didn't even know if I was doing the right thing. The research shows hysterectomy isn't the cure, and for some I'm sure thats true, but theres still so much about this disease that is not well understood, even by the doctors at the top of this field. But I know it helped me. So please find someone skilled in excision surgery that is transparent about their practice. My doctor even films all of his surgeries and gave me a copy of it. Look online, research your options and find someone that doesn't just have fluffy reassurances but that actually knows their stuff and who seems like they have good judgement. Thats super important, because its not just skill, but also the decisions they make in the operating room, that they will be in your best interests. Even the best ones are limited in what they can do, they can't perform miracles, so its scary to let someone who isn't that good go in and cause you more problems! Do your research, read reviews. But know for sure that you are not crazy and your pain is real ❤️‍🩹

Big hugs 🩵

[Sara0102]

Hi hun I feel ur pain I'm exactly the same ... I have pelvic pain every single day on my left side and a 6cm hydrosalpinx... on the NICE guidelines it should be removed bit I ambeen fobbed off.. andnow adoring 12 months for a app.. I am mea tally exhausted.. oh and they said I have possible endometriosis

[AllthatGlitters]

hello adenomyosis pain is very real. It’s severe pain: I have been on all 4s in absolute agony, labour like pains for hours on end and tramadol not even helping that much, it’s a cruel illness. Anyone who says it’s not painful has never experienced it.

I suffer with bloating, stomach swells up so big, heavy bleeding, fatigue, aching body, I do have fibro and CFS too.

Sending you a hug as I know how hard it is. I have been told I will eventually have to have a hysterectomy which I don’t want. I feel pressure to have one. I just don’t know what to do anymore xx

[MangoStickyRice]

I'm so sorry you are going through that. Adeno and Endo definitely can cause leg pain - referred pain can be felt anywhere on the body. From my experience, the general gynae consultants I've seen (6 in total) didn't seem to understand much about either condition. Do you get on well with your GP? If I were in your shoes I would set up an appointment with them and tell them just how much this is impacting your life (take someone with you if needed who can prompt you or keep the conversation on track). Tell the GP you would like a referral to a Specialist. I use the word 'tell' because asking for one might get the wrong answer

I hope you are able to get some answers.

[Sky2024]

hi, so sorry to hear about your situation. I also had a large fibroid (one of many), adenomyosis and severe endometriosis on my fallopian tube and bowel. My gynaecologist did a laparoscopy and myomectomy at the same time and removed 8 fibroids as well as severe adhesions. This is definitely not to be ignored. You should see if you can get help from a gynaecologist willing to remove fibroids. I hope you get it sorted.

[Taikaei]

Thank you so much, to each one individually for sharing your stories with me.

It gives a sort of comfort to being validated and knowing someone out there understands you but also makes me crazy mad the fact that doctors prefer to dismiss instead of admitting this is not their field or they don’t know anything about it.

I will keep going and trying to have answers. Doctors often see us only as “pregnancy machine” and they only looked into booking into a laparo when I said “yes okay I want to be pregnant” otherwise take a pill and shut up “it’s not that bad all women have periods” said my male GP when I was crying because my periodo did not stop a day for a year and I thought I was going to die for how weak and in pain I was.

Now my new GP seems to listen, but there are no other specialists she can refer me to.

I’ll find a way, thank you so much again for the support.

I send you back a huge virtual hug, and if I ever find a good doctor I’ll share the details if allowed.

[eunha in reply to Taikaei]

I'm so sorry your old GP said that to you ❤️‍🩹 my sister had her period not stop for a long time too. It is awful

🩷🩷🩷

[Adenowarrior]

my GOD!! I do wonder how these “specialists” can be so incredibly WRONG about the symptoms and effects of Adenomyosis and endometriosis!!

You’re right! It’s definitely borderline insulting-actually I’d say outright insulting to tell a woman such an untruth.

It’s well documented that the amount of endometriosis and Adenomyosis pain doesn’t correlate with the amount of symptoms; some woman can have Adenomyosis and not know about it ( lucky them?!) and some women have slight endometriosis and loads of debilitating pain or deep infiltrating endometriosis and only a little pain.

The fact that you have so many fibroids and one large one left after surgery seems obvious to me that this is what’s causing your pain in your legs.

I’ve just been put on pregabalin for the neuropathic pain caused by the Adenomyosis and endometriosis. There are loads of nerves in your pelvic area.

You need to see a specialist.

Try to arm yourself with info from medical reports from peer read articles and reports. Garner as much info as you can about your issues ands definitely about Adenomyosis.

We shouldn’t have to fight for proper treatment like this! Doctors need to buck their ideas up!

Why there’s such division amongst them regarding these conditions I’ll never know! It’s not acceptable!.

I hope you get your answers and some proper treatment very soon! Think you’ve been waiting long enough!! 🤨

Xx