2nd lap in early jan

[christinedaae229]

Hi all my name is Rebecca i am 32

New to posting here was diagnosed with mild endo on ovaries seven and a half years ago put me on the pill two packs back to back that did not help with horrible periods tried a few others did not help about 3 years ago was put on cirrelle to stop periods completly have had lots of break though bleeding and horrible pain mainly on right side pain radiating to back and down legs offtern get this without any bleeding at all. I have had lots of ultrasounds that never show anything. Doctors took me off pill quite a few times to have natural period those were not fun.

ibs was mentioned lots of times when flare ups happens tried medication for that did nothing said that because I suffer with consterpation a lot.

Two weeks before long awaited referral after being in on ff pain for 6 weeks ended up in a&e when struck with fiery pain that started in the back then radiated round to front I stupidly tried to continue to work hoping it would go off had ended up nearly being sick on a customer parents took straight to hospital they suspected it could be the endo but also had slight uti

I have now developed anxiety since my trip to hospital and even Went to a&e again because I was so worried about constant palpatations sugested I have 24 hour heart monitor which I am having done Monday. I have been getting between 2-4 hours sleep every night for nearly 4 months have only been allowed to work 2 hours a day for past month.

Getting nervous about lap because of my fast heart rate which sometimes drops to about 48bpm up and down all the time could the gas affect that? Was told if endo found they would ablate it. Is that best considering they done that 1st time round?

I do apologise for going on just worried about it all even thinking could be something else.

Thanks for reading

Rebecca

Ps sorry about spelling

[Starry]

Hey, sounds like you are having a tough time. Are you being treated in a BSGE specialist endo centre?

Best surgical techniques depends of the type, depth, location and personal case but I've heard if it's deep or severed the endo tends to come back quicker with ablation as there can be a risk not all is removed. Excision tends to be preferable when possible and appropriate but requires greater surgical skill, which is where the BSGE specialist centres come in. If this is a repeat treatment and it's returned I would be pushing for BSGE referral if you aren't in one already.

Link of surgical techniques here:

endometriosis.org/treatment...

BSGE

bsge.org.uk/centre/

[christinedaae229 in reply to Starry]

Unfortunately not having it done same place when I was diagnosed not totally happy with this because first time round the surgeon told me that it was very little there that they got rid of it all that I was cured told this to my gp she said she should never have said that.

I had a follow up appointment the same surgeon said I must have a very low pain threshold as the endo was so minimal

I have tried so hard to get this 2nd lap told lots of times they would never operate again by doctors and that it could not be endo because I am on pill and do not have periods but I still have some breakthrough bleeding and even had full periods whilst on the pill

Iam hoping this time as I have a Mr and was given the choice to have the lap that he knows were to look

[Caveo in reply to christinedaae229]

I have stage 1 endo too on my left side (ovary, ligaments & fallopian tube) the stage of the endo has no bearing on the amount of pain a woman is in ie a woman with stage 4 may have less pain than a woman with stage 1. So it's outrageous that you've been told you have a low pain threshold based on that!! I've ended up asking for a second opinion (now going to a BSGE Centre) as my Gynae didn't appear to know much about endo and was pushing me into having a hysterectomy. I was treated at a regular hospital and I didn't even know they never checked my bowel or bladder - is it possible they missed anything with you? When I had my lap they never even removed any of my endo - so nearly 6 months down the line I'm in more pain 😩 What I'm trying to say is that I'm not confident on the treatment from regular gynaecologists - hopefully now I'm going to a BSGE Centre they will be more thorough and have more experience/better qualified to treat endo

[Starry]

I would most definitely request a full copy of the post operative report to check what was actually done last time. I would also strongly recommend transferring to a proper endo specialist centre in the BSGE scheme. General gynaes even Mr s often aren't as expert in this complex disease as they like to say they are.

Caveo is totally right about the lack of pain correlation with symptoms severity as it depends on location of nerves I believe . Anyone worth their salt would also know the pill is often unsuccessful as a treatment. Deep rectal vaginal endo sub type in particular ( you mention bowel symptoms as well as ovary issues) is able to self generate the hormones it needs and tends to be resistant to hormonal treatments, which may be why some women still suffer symptoms even after TAH hysterectomy.

[christinedaae229]

My lap is on 6th Jan so I don't, think I can do anything about it now if things go wrong again and symptoms come back again I am going to tell them to refer them to the person who spoke at an endo support group I went to I know a customer who was treated there and has recommended him.