I was diaognoised with endometriosis back in february this year. I've since had two surgeries the last resulting in in a full hysterectomy. So I'd hoped my problems would have been solved. But as we all know endometriosis is never that simple.
Long story short I've also always suffered with back pain. Cocyix and lower. I had a MRI in 2021 which showed a small bulging disc. At the time I didn't even think it could be connected with the endo.
But no matter what I do... physio, exercises or rest, it never seems to improve.
I've been reading and sure enough endo can appear on some MRI imaging as a bulging disc.
I now feel at a loss. Everyone assumes I am better and cured now I've had a hysterectomy. But id really like to find out if it is endo.
Anyone else experienced this or know how I can move forward.
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Bubble41
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I'm in a similar position. I have really bad DIE endo at stage 4 right through the bowel, frozen pelvis etc. i had a first op about 6 years ago and then i had terible pain that stopped me from walking and driving for 18 months. This time the pain was in my back and initailly I thought it was damage to my back,I saw 9 different spine specialists. Alarmingly they all gave me different diagnosis form the same scan. 1 said it's yur discs you have a herniation, another said its a problem with the muscles, another blamed the facet joints, one more thought I might have ankoloising spondylitis (tests ruled this out), another one said I weighed too much (I'm 10 stone and 5'8' and he suggested deadlifing heavey weights at the gym to strengthen my back, one guy from the uS told me I needed a spinal fusion etc etc. The last guy I went to sent me for a diffeernt type of scan a SPECT nuclear scan because he thought I might have a tumour or facture in my bones.
He didn't menion this to me but I saw on the end of the report i had gallstones and two very large cysts on my ovaries. When I saw the cysts I thought I might be endo. I went back to my gyane and he did another MRI just of the abdomen and it showed that the endo had spread massively. Everything was stuck togther and the bowel had loads of endo it had also grow onto the ligaments between the back and pelvis.
I boooked in straight away for excision and had a very big op but not. hysterectomy (I think this was a mistake but I still wanted to try for a baby). I got my normal range of movement back and can now drive and do everything around the house and the level of pain dropped from about a ten to a 2. But I do still have constant pain in my back. The biggest help has been taking cerazette which has stopped my periods. I think the endo actually in or on the spine but I have searched high and low and I cannot find a doctor who knows how to treat it.
I'm also unsure that they can scan for it, the last guy I saw said he could see a mark on my vertebrae but didn't think it was nothing important and it didn't show up on the second scan. A spine MRI has a different protocol than the scan they use for endo and a spine specialist or even a neurologist may not recognise endo on a spnial scan because they have no idea about endo at all.
My pain is worse at night lying down is painful which means I don't sleep well and I'm often exhausted and although I'm better than before the op I feel the constant 24/7 pain has worn me down a bit and I feel I have lost a lot of my joi de vivre. The only thing I can think of to get any more help is to read studies and papers on spinal endo and to contact the authors who are generally the doctors who have dealt with this.
Currently my endo is getting worse and it seems to be in my diaphragm. I've asked a few surgeons abut more surgery but they have said the last guy botched my operation and the scarring inside is so bad taht further surgery is really risky. But I will research all the spinal cases I can and try to get in touch with some doctors who have experience in this
I'm sorry I can't offer more help but if I keep researching this I might be able to. I have heard that endo can grow even after a hysterectomy especially if your ovaries are left in. I wish I had had a hyseterctomy at my last op. That 's all I can say but basically back pain is super complex and becaused by a myriad of things and every neurosurgeon or spinal specialist will give you a different take on it, this makes me think they are largely guessing.
There is a doctor in Italy who does something very effective with discs and it's a cheap non invasive procedure,that might be worth a try I will try to find his details. Keep in touch and if I do get anywhere I will let you know what I find. It might be worth getting an abdominal scan becausethat should show up anything in the abdomen itself.Keep fighting , keep pushing, GPs will tell you it's IBS ,all down to stress etc etc. The only way to get help is to do your own research and find the right doctors. I'll let you know what I find. Good luck.
Thank you for your reply.I had a scan of my abdomen done privately which led to the hysterectomy. I mentioned my bulging disc to him at the consultation, he said if the doctor said it was a bulging disc it was more than likely that. But that a scan of my back by an endo specialist could be done. I didn't have it as at the time I wanted to beleave it wasn't endo. Also it would have been another huge cost.
I am still registered with an NHS gyneacologist. And expecting a call from him in December ( he is yet to know that I've had a hysterectomy) I shall ask him about my back and if I can be scanned. I don't hold much hope as as you say there just isn't the knowledge out there.
Sadly not Bubble, but mainly because I am too old. I had aselection of crap boyfriends before I met my wonderful husband but I was 42 then and my eggs were deemed too old. We did get some embryos form donor eggs but I also have very bad adenomysiosis so when I looked into it the chances of carrying until full term were very low. I had always wanted children and lost a pregnancy when I was very young which really traumatised me. I didn't think I could face the though t of having the embryos in and then losing them, so I didn't go through with it. So the infertitly was more down to my age than the endo but with all the pain etc I don't think I could have managed a baby anyway. But I've come to terms with it I have 10 nieces and nephews who are fantastic so I feel okay with it. I'd just be over the moon if I could be pain free, even for a day.Lidle knows quite a lot about endo after menopause which might be similar to endo after hysterectomy. She might be worth asking. It could just be your back, discs are really troublesome, and as you can see from my adventure I'm really not convinced any doctors really know what to do with back problems.
This guy in italy has a non invasive treatment for disc issues which is meant to work realy well but he is in Italy, but his treatment is non invasive and way less expensive than an endo op. I sent him my MRI and he checked it for free, might be worth a try....
I'm intersted in your question due to my own current issues. I had no idea that bulging discs could be endometriosis.
very long story short 18 months ago I suddenly started having terrible headaches, pain over my nose and ears (not sinus pain), head tremors and then neck pain. Its not a head pain I can describe very well. the tremors have stopped but my neck does jerk frequently. The pain has been unbearable. I have had little support from the GPs. I paid privately for a MRI which shows some general degeneration and some bulging discs but I was told it was mild and sent on my way (with the bill!). I'm at wits end now as its worse when I lie in bed and also siting down. I have started wondering if it could be related to my endometriosis and adhesions of some kind.
I finally managed to see a physio last week after being on the waiting list for about 12 months and he mentioned that most people will show some spine problems on an MRI and my problem may not even be related to what was picked up.
After reading your post I will look into this further. Sorry I cant shed any light on your own issues and I hopeyou get some answers.
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