Heavy ache/pain and Endo/Menopause

[Kathwents]

Im new to this site and really hope someone may be able to help. Im 49 and have had Endo for a quite a few years so at 37 I had a laparoscopy that found I had endo over uterus, ovaries, rectum, bowls and a few scars too. I've also been lucky enough to have 3 kids which although the first time I found it difficult to conceive the next 2 were easier, happening within 18months of each other (doc said before endo could take hold again, apparently). When symptoms came back after my laparoscopy and rather than have a hysterectomy, I was advised at 41 to have the Marina coil fitted. This has been great as it stopped my periods completely. However, over the past couple of years I've noticed the dull ache/pain at the bottom of my uterus come back and stay there constantly anytime from 1 week to 3 weeks, go off and come back again. It is SO debilitating and brings me down, makes me feel horrible but I do just 'carry on' as you do! I do suffer a bit from a nervous tummy (IBS), so I decided to go to a private Gynae man to find out if it was indeed the IBS or the Endo causing these issues. There was no real conclusion and of course COVID hit too so I've not pursued. I realise at 49 that I may be Perimenopausal or menopausal (who knows!) and I suppose I have two questions - 1: is there anyone out there that has the same sort of symptoms as it would be a great help just to know Im not the only one and 2: Is Endo exasperated by the menopause ie can it cause flare ups or anything? At the moment I'm waiting until the Covid situation has calmed down to properly consider a hysterectomy as if I get the blasted thing out, maybe this will stop or at least reduce this awful feeling. By the way, no painkiller I've tried gets rid of it.. its like a dull ache, almost like scarring or something pulling.. Hoping this all makes sense to someone. Kind regards, Kath

[plotments]

My endo symptoms got worse when I was about 44, I think it's definitely got something to do with the change in hormones. I'm 47 now and after two laps I'm waiting for a full hysterectomy and removal of bowel endo. I have lot's of pain from pulling and burning sensations.Did consultant suggest hysterectomy to you?

[Kathwents in reply to plotments]

Hi Plotments and thank you for your reply - I can't tell you how great it is to hear from someone that seems to have the same as me! Although Im sorry you do.... Do you have a pain/dull ache all the time or for long periods of time? I've always talked about hysterectomy with consultants through the years, but to be honest, I've tried to avoid it at all costs, mostly due to me being a scaredy cat and avoiding hospitals at all cost! However, with the way I'm feeling today, I almost want to do it myself - I've had this latest bout for 4 weeks out of 5 which causes my lower intestine to go into spasm overload and rather a lot of trips to the loo - too much information, sorry, but it is a symptom! Does yours sound like that at all? Im also wary of the bowl endo and wonder if the scar tissue has fused the bowel to the uterus - are you going for a keyhole surgery for your hysterectomy or are they going in from the top? KR Kath

[plotments in reply to Kathwents]

The pains have become worse over the last few years and are now constant, dull aches sharp and stabbing twisting and pulling, symptoms sound same as you. Lap in Feb last year showed bowel endo, endometrioma and endo all over pelvis. I'm on prostap at the moment to see how I'll cope with a full hysterectomy or if consultant will need to leave an ovary in, which hoping he doesn't as endo will be more likely to return. My consultant specialises in keyhole so hoping it will be done that way. I go to see him next month to arrange op details and give consent. I was hoping to avoid surgery as well, but doesn't look that way now.

Have you tried taking any bowel meds to help with spasms?

[Kathwents in reply to plotments]

Oh, actually, I've also been diagnosed with adenomyosis about 5 years ago... does this mean anything to you?

[plotments in reply to Kathwents]

I haven't been told I have adenomyosis but things are pretty messed up inside anyway.

[Kathwents in reply to plotments]

Yes, Im so sorry to hear that... its such a nightmare just trying to get answers. The only way to know exactly what's going on is via a lap which of course is an instrusive procedure in hosp - I wonder if MRI's can show what's going on at all?I was just wondering if you still had your periods as I was told almost how can I have endo when I don't get periods? (due to Marina coil) .. which made me doubt myself ... I really don't know the best option apart from a full Hysterectomy as Im probably on the cusp of the Menopause anyway and am certainly not wanting any more children.

[plotments in reply to Kathwents]

I think most scans don't really show endo but they can rule out or pick up on other things. You must never doubt yourself DR's don't know what your feeling or dealing with so don't be fobbed off. And to be honest most of them don't understand endo.Periods have been erratic for a year or so, but the endo can still be active even if periods stop as it can create it's own hormone. Yours have only stopped because of coil, mine stopped when I was on the pill but I still had bad endo/bowel pains. You have already been diagnosed with endo in the past so ask your GP for a referral to a specialist endo centre as the endo needs to be removed by someone trained to do it at the same time as hysterectomy otherwise symptoms can continue to cause problems.

This site has lots of information on it and it's worth reading over posts to help you understand what your dealing with and which route you should go down.

I hope you can sort everything out soon

take care.

[Kathwents in reply to plotments]

Thank you so much for your kind words and I'll look into the site more. I hope you get your side of things sorted too - KR Kath

[plotments in reply to Kathwents]

Fingers crossed for us all

[Natasha70]

Everything you have said there darling that’s me they told me my my scar from caesarean the endometriosis over the years had attached to it i, following and mri all confirmed it’s that it has attached to my bowel bladder uterus so I sighned surgery forms on 14 th dec 2020 to be able to do my hysterectomy they have to remove endometriosis by open surgery the pain is unbearable like to say it’s like a pulling it affects my breathing it’s all in my back near my lungs told consultant he said I’ve got stage 4 apparently it’s been in me for years no pain killers get rid of it to ease pain my doctor checked my vitamin b12 levels they were low so now have injections releases the pain a bit hope this help I’m new on here