Lower back inflammation

[princessk09]

Evening everyone,

I was at the physio again today for my back pain however today it was a little different. I am having a pain flare up around my pubic bone and pelvic area with the dull ache and sharp pains. I can only guess this is ovarian cysts or ovulation.

Anyways, I told my physio and he could see my lower back is very inflamed so he treated it however it is still really sore. He mentioned how the two areas are connected in a way but it has me thinking may my pain issues haven't been solved as I still get very bad periods.

Should I mention this to the nurse when I go for my next zoladex injection or would I need to speak to the doctor. My gynae is useless and would not be very helpful. During surgery he apparently checked everywhere but I'm not convinced since I still have issues.

[NW248]

Have you had an MRI, it usually shows up endo and sees it in the places that are hard to reach with surgery?

Also, ask your physio for a treatment called mega-pulse. It is an energy pulse machine. I was treated with it for bursitis on my pelvis but it did wonders for my endo.

[princessk09 in reply to NW248]

I don’t think he has one of them machines haha and no I haven’t had an MRI as my surgeon said there was no endo in my back area or anything just around my uterus xx

[Nicjane]

I'm in the same position. I apparently had stage 3 and it was 'all taken away' in 40 mintues?? bit odd I find since I read many people having to be in surgery for hours for such a high stage. II seen no photos or had a physical report. I did have a follow up which was very vague. Sorry to hear about your bad back. I get back and rib pains and think that is to do with my bowels. I had the worst period since my op last week! that specific endo feeling was there and it reminded me of what i was like before, only thing that improved was not being in agony when peeing. Best of luck keep us updated, sorry I haven't got much advice but you know your not alone!

[princessk09 in reply to Nicjane]

My follow up was so vague and he was useless like he deleted my file 😂 and just gave me zoladex for 6 months. Yeah I have a bad back and a shooting pain up my bum as well which is was I had before surgery xx

[Nicjane in reply to princessk09]

I wasn't even told wear it was all I know it is was on my left side. Do you know how long you were in surgery for? I cannot believe he deleted your file I am in shock! xx

[princessk09 in reply to Nicjane]

About an hour I think, honestly my gynae didn’t even know what to talk about at my follow up and ignored my points on how I’m still having issues 6-7 months after surgery. Xx

[Nicjane in reply to princessk09]

My guess is that they might be ''too confident'' in their skill and is doubting the fact of missing any, endo I think can almost be invisible or so so small it can be easy to miss. That is what I think happened to me. Some people who have had no endo visibly seen have been in surgery longer than me. It is all so confusing isn't it. I been put off going to my GP as i Think they won't believe me once again xx

[princessk09 in reply to Nicjane]

Yeah, its so frustrating as well as I always seem to be back at square 1 and they obviously won't do a hysterectomy as I'm only 19 nearly 20 but I am running out of options xx

[Nicjane in reply to princessk09]

I want to hold off a possibly hysterectomy for as long as possible since it doesn't sure endo completely and the hormonal stuff you got to take forever is unpleasant for some. But keep researching and reaching out! We find answers I'm on this journey with you xx

[Juliak]

Hi I was on zoladex for over 12 months (endometriosis, large fibroids, heavy/painful periods) and had excruciating lower back pain for a while. It did eventually pass. I did some research at the time and back pain seems to be a common symptom of taking zoladex. Definitely worth mentioning it to the nurse and if you’re worried talking to your dr...persevere if you don’t get a satisfactory response/are still suffering - we’re all so different so what works for one person might not be right for you. Listen to your body...Good luck!

[weekari]

Did you ever have back pain before zoladex? How long have you been on it?

My story is looooooong! But My main symptoms have been fatigue and back pain. I had a lap in 2016 and nothing was found & I was discharged. My back pain progressed and I saw a physio, after working with them 4 months or so, I got worse and was referred to orthopaedics who sent me for an MRI, suspecting arthritis. The MRI showed severe endo, fibroids, a large cyst and a large complex tumour. After a bit of a fight, I'm now being seen in a BSGE endo centre, on decapeptyl (just like zoladex) in preparation for surgery to remove it all (hopefully!).

I've been on the decapeptyl for a month and due my 2nd implant on Fri. It's been a rough 4 weeks. I've been floored with fatigue and my back pain has been a lot worse. I've had a lot of very weird abdominal pains too. I feel very inflamed. I was told that, initially, there is a worsening of symptoms as the body will produce more estrogen initially before the ovaries finally shut down. I'm wondering if you're early in your course of zoladex, if this is what's happening?

When you had your lap, was this with general gyne? When did you have it?

[princessk09 in reply to weekari]

Hey, I have suffered back pain for a few years but it was mainly put down to playing golf everyday and stuff until I was diagnosed with endo last year and even my physio said about the pelvic pain flare up links with back pain. I have only been on zoladex for about nearly 3 weeks I think so it could just be a side effect but it was a general gynae who did my lap I think. I'll probably just see what the nurse says in a few weeks but its just so annoying xx

[weekari in reply to princessk09]

An MRI might be helpful- it can sometimes pick up deep endo that's difficult to spot at a lap- especially if done by a surgeon less experienced in endo. NICE guidelines state that surgeons doing exploratory laps should at the minimum, have a specialist interest in endo. If you feel they've missed something, this could be a route to go down and try get a more qualified opinion?

You sounds pretty inflamed just now, it's an awful feeling. I hope it calms down for you soon. x

[princessk09 in reply to weekari]

Thank you, I’ll mention it and see if they will let me have one xx