adenomyosis/endo can’t walk or stand up straight due to crippling back buttock and leg pain PLEASE HELP🙏🏼

[Servante]

so I’ve had years of suffering with heavy bleeding and clots, flair ups that cause horrific sharp back pain, severe rectal pain going to the toilet and sitting (when bleeding) extreme bloating, bladder tugging feeling and many more…

I had a flair in dec which left me unable to stand or walk for 7 weeks due to back pain/womb cramps and now again I’m on week 5 of being bed bound, can’t stand up straight or walk with horrific right sided nerve/sciatica pain in my bum cheek hip leg right down to my toes

I’ve had a terrible time with consultants diagnosing my pain, telling me I’m getting confused with crohns and other things 🤯 not being listened too etc

all my symptoms are text book endo/adeno

Ultrasound Scans and examinations have shown a bulky uterus MRI showed hemorrhagic cysts

Laparoscopy in April showed no endo except a bulky uterus which my consultant (endo specialist) said he suspected adenomyosis but didn’t see any endo or adhesions…

I’ve always explained that my pain is deep almost feels like it’s behind my womb in front of my rectum it’s always worse pains In my back more than my womb…

I’ve been on decapeptyl for the last 3 months which has stopped my periods clotting and rectal pain which is fab but it feels like it’s amplified my lower right back and right leg pain… I’m awaiting a date for hysterectomy but my consultant doesn’t think my back pain is related and hysterectomy won’t cure the back pain…

please can anyone relate at all?? Has anyone been told u don’t have endo or fibroids but then it’s found deep during a hysterectomy??

could it be adenomyosis alone causing this??

How far or deep can they see during a laparoscopy?? I’m at my wits end 😭

I’m being seen this weekend by Orthapedics to check out my back and have another pelvic MRI too I’m preying is shows something more

Taking so many tablets, ibuprofen gel, heat pad, ice packs and tens machine nothing really helps 😭

Don’t want a hysterectomy then still be crippled like I am 😭😭

Thankyou so much for reading ❤️

[Avourneen]

I had this for 18 months and could not walk. I thought it was aproblem with my back and I saw 9 different back specialists....all of whom diagnosed totally different things from MRI scan. The last one I went to was a woman and she asked me if I'd ever had endo and said it could cause terrible back pain.

I had an MRI and had really bad adeno and endo fully frozen pelvis and endo through the bowel. I had an op where they did excision and I still have 42/7 pain but at a really low level. They couldnt get the womb out as everything too stuck together , I am also on cerazette at a double dose which has totally stopped my periods . I have my life back.

You can get help, your pain won't last forever plaese go and see a proper endo specialist and get another scan, will DM you. Take heart don't give up.

[Inonge1]

Sorry that you're going through so much. I've got endo and adeno, diagnosed by MRI after 30 years of misdiagnosis. I also experience the pain in my lower back and down my left leg. Toileting is horrendous. I personally decided against hysterectomy as been told that excision was not an option for me,so figure neither will hysterectomy.

I've had 3 MRIs this year by physiotherapy as they're also trying to figure my pain out, and 1 through gynaecology, last one was yesterday 4 August for my lower back🤷‍♀️

All I can say is push for investigations as living with pain is horrendous.

Best wishes.

[BloomingMarvellous]

As with the others here but perhaps adding this to the understanding behind the pathology of the pain.

Any swelling can cause referred pain in tissues and nerves this we all know so endo/ adenomyosis conversations that go “it can’t cause this pain “ is frankly politely pants.

Next there is a lot of evidence emerging that endo is promoted by bacteria such as Fuseobacteria and Klebiesella for starters. Infection causes inflammation aka pain. Left to run riot more lesions more sweeping more dysfunctional tissue = no surprise here PAIN !

Lastly , the uterus is held and positioned by the extraordinarily large and strong uterine ligament . At three fingers width this is a beast and it has a job to do so needs to be. Pelvic ligaments of which this is a very prominent one , hold our hips, sacrum, spine and ergo our legs in the correct position. It has then an effect on pelvic floor and diaphragm functioning. Put that ligament under strain, affected by endo tissue or with adhensions and you have one hell of a problem and a motor for constant pain. Getting specific physio designed for us is therefore key to improving pain management and mobility! Try @corerecoverypt for information and explanations.

Your pain is real , it needs management be it surgery, anti inflammatory diet, core recovery physio and maybe antibiotics. Don’t give up and you’re not alone xxx

[Servante]

thankyou I really am so depressed right now I have a brilliant husband and 2 children 9&13 who do help too but it’s completely stripped my life away from under my feet.. it’s crazy drs dismiss us so much… on my first app after waiting 18 months to be seen, I explained it all and she sat In her chair and said she thinks I was getting confused with my Crohn’s disease pain 😭

[BloomingMarvellous in reply to Servante]

Endo and Adenomyosis both affect oestrogen receptive tissue . There are receptors for oestrogen across the body including the gut, so yes this disease can have a knock on with the gut, but it doesn’t make it “Crohns based”. Where you get one autoimmune kicking off another will usually jump on the bandwagon. They aren’t sure what triggers adenomyosis ( local physical trauma like D&C ‘s,pregnancy, progesterone & progestins (!) being possible culprits as well as oestrogen) but we do know it will commonly see a rise in prolactin levels too. Where there is a rise in prolactin you will see an elevated pain experience because of it’s metabolic effect. They aren’t sure whether higher prolactin is a root cause, or an effect, or even both but it’s a noted potential bio marker for both adenomyosis and endo. Where there’s high prolactin, dopamine levels will dip increasing depression rates. There have been studies where Cabergoline is used to lower prolactin & demonstrating a significant reduction in adenomyosis over 3 mth period at a rate that far outstrips the usual sex hormone antagonists. More recently they are looking at Prolactin receptor antibodies as a treatment route that’s even better tolerated.

Know your depression may well have this strong physiological component and that in itself makes it so much harder to be on it with self advocacy. Even harder in with a disease where they don’t actually have clear vision as to the root or possible solution. Be prepared for a lot of casting about for theories and wonky explanations but hold your truth. It’s no good enough to give you half baked dismissals as the Dr did.

I found it really necessary to take my other half to get proper due consideration and any progress at all, as well as any half way decent explanations. I’ve had to do a lot of reading and research and then gone in with specific requests and links for them to read. Here I’ve found they often look blank and the separation of “noted conditions “ into depts doesn’t help either. I guess it doesn’t go down to well to be found wanting in knowledge but often with these problems the patient will have the motivation and time to forward appropriate solutions. So for example : my high prolactin never got recognised as coming from the adenomyosis or endo so for that I see an endocrinologist who knows zip about endo and adenomyosis and won’t see it as territory to explore despite all evidence to the contrary that my prolactin being raised does not come from my pituitary gland. My prolactin rises when I have adenomyosis flares and yet I still can’t get a sensible conversation going. They insist the problem is then endocrine based and round in circles we go with the endo lot dismissing the prolactin research. We can have more than one disease but that doesn’t make us confused , or that the issues aren’t connected. Parking us in the wrong dept with ineffective care doesn’t solve anything. Go back , email , talk to her secretary and say the appt was a nonsense and the issue needs properly addressing. Keep going and ask for a second opinion.

We need to keep having these discussions and banging the drum . It’s worth discussing these potential routes for treatment with your medics. They may strike gold for you. Meanwhile Omega 3, Vit B6 , Curcamin and Vitex have been self care options that are recognised ways to temper prolactin levels.

[Tttt4444]

I had excruciating back pain before my surgery, it felt very similar to when the dentist hits a nerve in ur tooth with the drill. The back pain would last for weeks at a time every month, it would start out of nowhere and no pain medicine helped at all the only thing that helped was if I took prescription muscle relaxers with heat on the area constant, neither helped on their own I had to have the combo of both. My gyno told me the back pain was not related before the surgery (I also had a bloated stomach every day it would start flat in the morn and look nine months pregnant after I ate eve a few bites, he also told me that’s aunt related) both problems stopped after surgery. I had a 4 by 6 cm chocolate cyst on my left ovary which was the side of the back pain and I believe that’s as what was causing the back pain, but I’ve read it could also be from endo near a nerve. The bloating still happens at a much less severe level only occasionally but I haven’t had the back pain since my surgery two years ago. I had the back pain for ten years and was completely disabled by it unable to leave the house, even on days when it wasn’t hurting it could flair up anytime and I was scared to have it flair when I was out of the house because I needed immediate heat. Also after my surgery I was still having pains in my stomach after healing and the doctor told me it is from microscopic endo that can’t be seen during surgery, I have also read microscopic endo can cause just as severe pain and symptoms, so I would imagine they have u on the hormone meds to treat the symptoms of the endo that can’t be seen….also a side note since my surgery I have found a rechargeable cordless heat pad I use for my endo pain in my stomach that would have made it possible for me to leave the house, they sell them on Amazon