Hi I’m really unsure which way to turn next, I had a lap last year and they found I had endo and adeno, precious scans and laps didn’t find anything. I’ve been on the depo for nearly 2 years and don’t have periods which is a good thing for me as they are awful, I spoke to my gynaecologist a few weeks ago over the phone and he mentioned scar tissue could be causing pains again etc, I had an ultrasound done yesterday and it’s clear I did expect this as precious ones been clear, however I am now stuck as pains getting worse and don’t know what to do?
Any ideas? Xx
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Lou93
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He burned it away and was great after surgery for about 5/6 months then boom pains come back even worse than before, previous MRI didn’t show a lot either but not had one recently.
I had Helica treatment which is a form of burning. I did research whys and wherefore’s, I know burning is not always considered the best treatment. I went with it as a treatment it had a more than reasonable success rate and the consultant had a lot of experience and knowledge.
Are you expecting to hear back from the gynaecologist? If not, you may have to contact them, if they aren’t that specialised maybe ask GP to refer you to someone else, and pain clinic.
Can I ask was your endo in patches or scattered like weeds so my gynaecologist referees it as? As this was a possibility mentioned to have done but never did do it? & not everywhere has the actual tools to do it?
I’m not sure of full extent, I know it was pelvic walls, pouch of Douglas on and in bowel. He didn’t think there would be much, afterwards said loads, so I’d probably say it’s scattered. He couldn’t see everywhere as uterus is enlarged and distorted with fibroids. Only see one ovary which looked ok.
I need to ask exactly what’s what, just avoided it. In a letter after op he put down further surgery could be complicated.
Same, just taken someone to B&Q and it’s kicked off.
Waiting for them to organise endo MDT still to find out what they want to do. The local hospital has a BSGE centre, obviously not organised after covid interruption 🙄
Hi babe, how are you doing now? I’ve had a really bad flare up. Called my doctor on Friday she said I may have a pelvic infection so she gave me 2 sets of antibiotics which didn’t work with me. Been throwing up all day and feel so dizzy. The pain is just so unreal. What does everyone else do when it gets like this?
I’m about to have a hysterectomy for the adeno (totally curative but it is worth processing this major choice beforehand with a psychologist to make sure it’s what you want), as well as a bowel resection of my bowel endo and excision of my other endo.
Adeno can cause horrendous daily pain. For me it causes the most horrendous unrelenting lower back pain. A hysterectomy is a major surgery as well as a major decision to make but in terms of some relief and symptom improvement it might be really helpful for you.
Hope it goes well for you I don’t want children so this is an option for me but will have to discuss with them as I’m 27 there not keen to do this yet x
Just read your post above..do you got a feeling in the lower back/coccyx like the back is stiff, strained and weak to move? Also sciatica symptoms so shooting pains with sometimes feelings that the back will give way at any time? My lower back is painful to touch on the skin is yours the same? I have laparoscopy next month but they think they’ve seen adenomyosis on the ultrasound xx
Yep- it feels like my spine or muscles are tethered to something that pulls.
And my skin is puffy and incredibly tender to touch - I have also been diagnosed with fibromyalgia so who knows.
I also have several blood vessel tumours in my s1 (hemangioma’s) and evening though they are allegedly rarely painful I’m fairly sure mine are painful!
All that said I had a hysterectomy plus endo excision plus bowel resection 13 days ago and my lower back pain has been much much much better, almost immediately. I’m waiting for my post op review but I have a feeling I had adenomyosis, which is cured by hysterectomy, and which also includes severe low back pain as a symptom.
I understand how that feels the fear of them not finding anthing is awful . Ive had 2 scans , one of the MRI they both showed severe endo , ive had 2 laps done and no live endo has been found , cant get my head round it , does an mri with dye help not had that done ? Xx
The lap i just had done showed that my fallopian tubes were stuck to my ovaries , my pelvis was full of blood and they found retrograde menstruation, the plan was to remove my fallopian tubes which they did and to have ablation done to stop the lengthy heavy periods . The fallopian tubes were removed to.lesson the risk of cancer . I really hope they find it for you , this disease not only wrecks you physically but has a bit impack mentally , best of luck xx
Hi I had one under general gyne they didn’t find anything then had an emergency surgery because of a bleed and another general gyne said they didn’t see anything, third time lucky for me as I chose my dr who specialises in endo and he found all my issues, hope your surgery goes well and remember you know your body xx
Gosh how is that possible. I really feel for you. So worried now that they won't find anything. Did they not even find a cyst or a polyp or a fibroid. I just don't know what/how to feel tomorrow if they say everything looks fine.
It was about 5 years ago yeh I’ve had cysts before but they seem to go in there own and it’s very rare to have a complication like I did try not to worry if they don’t find anything get a second opinion, does your dr specialise in endo? X
So mine has moved from.nhs to private due to covid. The consultant that's doing it tomorrow has endo among her accolades/specialities when I google her as she does a lot of private clinics too. My original consultant wasnt an endo specialist so in a way feeling much better about it. I'll ask her lots of questions in the morning.
Even better then I really hope they find out what’s going on for you, worst bit is waiting and yes mine works for nhs also but main work in private sector think they all do a bit of both, let me know how you get on xx
Hey love, so the consultant changed on the day, was not a specialist. They removed adhesions near c section scar/pelvic wall. I will have to wait for a follow up call with her, but otherwise they said no sign of endo or adenomyosis and all okay. Not sure if they helps explain my pain but will be guided by my symptoms I guess. I really hope it helps provide some relief.
Plan to try for a baby soon.
Did you say you had a natural birth after a lap and c section?X
I have adeno and endo. I was offered the option of a variety of surgery - releasing scarring (which specialist thinks may be causing some of the pain- uterus stuck to stomach wall), half or full hysterectomy. I have had bad experiences with surgery before so for me I have decided it isn't worth the risk. Particularly as the pain may still be there and the chance of more scarring.
I've had some success controlling the pain through other methods and although I still have some pain it is manageable. I've had chronic pain input from our local service, therapy, use the curable app, meditation, yoga, TENS, diet changes and painkillers as and when needed.
I think it probably depends how much pain, what you have tried etc. And how you feel about surgery and its risks.
I sometimes worry that sometimes there just isn't a way of reducing pain surgically and that sometimes that may not be reflected here.
I hope you find something that works for you and I'm sure your specialist consultant can help you make that decision. Xx
Thanks for commenting, hope your having a good day.
I’ve tried all sorts and when I last spoke to him it sounds like another surgery is on the cards and pain relief some doesn’t work well anymore as taken them for a while xx
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