Unsure what to do next...: Hi I’m really... - Endometriosis UK

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Unsure what to do next...

Lou93 profile image

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

34 Replies

Hi

What did they do when they found the endo?

Ultrasound rarely shows it, have they done MRI?

Lou93 profile image
Lou93 in reply to Moon_maiden

Hi

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.

Moon_maiden profile image
Moon_maiden in reply to Lou93

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.

Lou93 profile image
Lou93 in reply to Moon_maiden

Yes they are calling me end of this month but may call them to see if I can chat to them again, yes he is a specialist in endo.

Moon_maiden profile image
Moon_maiden in reply to Lou93

Good luck, hope you get something sorted soon. I’m sure you will

Lou93 profile image
Lou93 in reply to Moon_maiden

Thank you let’s hope so☺️

Hi,

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?

Thanks

Lou93 profile image
Lou93 in reply to Gingernut74

Hi patches he said, I went private in the end as had years of let down on nhs so he is one of the top doctors where I live thankfully, x

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.

Lou93 profile image
Lou93 in reply to Moon_maiden

Yeh ask exactly what was found and about surgery I have endo and adeno so that can cause me daily pain, it’s a nightmare to live with x

Moon_maiden profile image
Moon_maiden in reply to Lou93

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 🙄

Lou93 profile image
Lou93 in reply to Moon_maiden

Nightmare yes everything is delayed x

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?

Lou93 profile image
Lou93 in reply to leajg16

Hi still in a lot of pain, feeling very sick with it also so I’ve been lying down on my bed most of the day x

Hey Lou

I have adeno and endo as well.

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.

Lou93 profile image
Lou93 in reply to Ollie2512

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

Romano1234 profile image
Romano1234 in reply to Ollie2512

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

Ollie2512 profile image
Ollie2512 in reply to Romano1234

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.

Hi there, how many laps did you have before they found something?

Sorry to hear this, I'd push for an MRI pelvis with dye.

My lap is tomorrow and really worries they will find nothing

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

I think it helps to indicate deep endo. Mine never showed anything.

I'm sorry to hear that the 2 laps showed no endo. Did they show anything? I just don't want it to be a wasted op.

Ask for the MRI with constrast dye. But this may not indicate anything if it's not deep.

I'm so sorry your pain is back.

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

Lou93 profile image
Lou93 in reply to Sal9956

Thank you and you xx

Lou93 profile image
Lou93 in reply to priyainindore

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

priyainindore profile image
priyainindore in reply to Lou93

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.

Lou93 profile image
Lou93 in reply to priyainindore

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

priyainindore profile image
priyainindore in reply to Lou93

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.

Fingerscrossed.

Lou93 profile image
Lou93 in reply to priyainindore

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

priyainindore profile image
priyainindore in reply to Lou93

Thank you and yes will let you know. x

priyainindore profile image
priyainindore in reply to Lou93

Thank you and yes will let you know. x

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

Lou93 profile image
Lou93 in reply to priyainindore

Hey aww hope your doing well after surgery, I really hope it was just scar tissue causing you pain.

Great news and I’ve not had children xx

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

Lou93 profile image
Lou93 in reply to CelestialFluff

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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