Endometriosis?.: As anyone had a normal... - Endometriosis UK

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Endometriosis?.

Painpainpain profile image
10 Replies

As anyone had a normal laparoscopy but still had Endometriosis ?. Also has anyone had pelvic floor thearapy for Endo. or Scar tissue and did it help?. I really want to try it but don't know how i am going to stand the pain.

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Painpainpain
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Vicki_Ann profile image
Vicki_Ann

If your laparoscopy has been performed by a general gynae rather than an endo specialist, endometriosis lesions can be missed so it is possible to have a normal lap and still have endo.

Also everything I have read leads me to believe in many women with endo, the pelvic floor muscles are overactive and therefore pelvic floor exercises are not usually recommended.

Hope that helps!

caroljane80 profile image
caroljane80 in reply to Vicki_Ann

yes yes and yes . Ive had it missed twice by my state hospital in the uk . It took a private lap at cost by and endo expert to diagnose it and again more recently it was missed also and had to pay for private lap and they found it . Total cost for all this was about £ 2000 first time 10 years ago and £3200 plus about £400 in consultation fees recently . Still got pain but we are working through the possible causes at my own cost and im taking legal action against our state hospital ( who is a bsge centre by the way ) they want hanging up by their balls seriously for their incompetence and aggressive attitude when you go back to them still in agony and suicidal because of the pain so i know it costs but get an expert and forget the government hospitals. There are some good ones i do believe but a bsge centre only really means they do laparoscopic techniques not necessarily that they are endo specialists although some say they are but still must do it with a blindfold on !! good luck hugs xxx

Painpainpain profile image
Painpainpain in reply to caroljane80

Do they know whats causing your pain now ?.

Painpainpain profile image
Painpainpain in reply to Vicki_Ann

I was thinking of using it for scar tissue stretching which some people have said it as helped. Some physios only seem to deal with the incontinence or prolapse side so i am trying to find someone who deals with pelvic pain.

caroljane80 profile image
caroljane80

no not exactly. Im suspecting its the adhesions on the outside of my bowel as it hurts when it gets full of poo . It goes away only when the poo is water for example when ive had anti biotics or a bowel cleanse ( the sort you have before a colonoscopy no the enema kind ) then it comes back after a couple of days when everything goes back to normal. Im seeing bowel consultant in a couple of weeks after this colonoscopy which i had yesterday . They found nothing in colonoscopy but its important to be aware that colonscopy only goes so far . It doesnt look at the small intestine. For the small intestine there is something called a pill camera which they do at a different hospital they dont do it at the one i had the colonoscopy. He divided the adhesions and removed the endo on bladder about 2 months ago but i still have pain in right side. I suspect the endo wasnt really causing much of an issue just the adhesions from the numerous surgeries for endo that ive had. I had a hystorectomy with ovary removal in oct 2016 made no difference to pain in fact it got worse . Its possible the surgeon who did the hystorectomy also damaged something but they are keeping quiet and wouldnt even look into the pain i had they were quite aggresive really and sent me for an mri. To get the mri i had to see the surgeon who did the hysterectomy privately cost £170 and he then arranged it on nhs but its useless really it doesnt show anything and then he used that to prove nothing was there. All kinds of grief and sarcasm off my gp saying i was making it up etc etc and then the gp decided to take all my pain meds off me on the basis of this mri . I swapped gp and went elsewhere. I told her she needed to go back to medical school and left. New gp alot better now on oxycodone which just about keeps me sane and i plod on with private investigations and an ongoing legal case which solicitor thinks is a good one. They did a lap before the hysterectomy and said you have no endometriosis in July so took me off the gonadatrophin agonsist and did the hytorectomy afetr which i was in worse pain ever and this continued and still ongoing now is the pain but blankly refused to do anything to help me so by about 5 months and hanging onto my job just about i went private and having to cover all bases to find anything. Im not a stupid person i have a science degree and A level in biology but i have never known anything so corrupt and incompetent as some of the doctors and surgeons who deal with this condition . Makes me feel like becoming a doctor myself to just help people properly !!!

Painpainpain profile image
Painpainpain in reply to caroljane80

How did you get them to do a hysterectomy ?. I was looking at that but they wont do it unless they are sure the pain is coming from there. How do you work i can barely get out of bed some days ?.

caroljane80 profile image
caroljane80 in reply to Painpainpain

hi i cant work at the moment im on long term sick. Suprisingly they did a hystorectomy even though they said they didnt find endometriosis. Be aware though a hystorectomy is not a cure all. If there is endometriosis on other parts of your body eg ladder bowel etc it wont make a blind bit of difference as the hrt can aggravate it. Also if you have a hystorectomy they need to remove the ovaries . If endo is confined to your uterus only a hystorectomy may help. Try gonadatrophin agonists if you can first this would give you some idea what you would feel like with a hystorectomy if you had your ovaries removed as it temporarily shuts down your ovaries and it is reversable. My problem may be something else entirely yet and maybe thats why my hystorectomy hasnt made any improvement and im still looking into what it might be. Also ive possibly created more problems by having the hystorecomy because of the adhesions that form after surgery . The adhesions are very very painful in themselves so you dont want to create them if possible. Hope that helps. Maybe swap to a different hospital or go private possibly? ps please take tibolone hrt if you have gonadatrophin agonists or a hystorectomy as estrogen/ progesterone will make it grow like wildfire.

ThaliaThalia profile image
ThaliaThalia

I haven't tried these techniques, but anything you've been advised to try is worth a go.

You could help heal the scar tissue with a selenium and zinc supplement (try Pharma Nord). Fish oil will reduce the inflammation (I use Nordic Naturals). Also, I strongly recommend following the endo. diet.

Please let us know if the techniques work. x

Painpainpain profile image
Painpainpain

Does it get rid of it or just the pain ?. Thanks for those i will have a look .

starli profile image
starli

Please look into purchasing Estrosmart. I am on my second month taking this product and already I have seen significant improvements in period pain. My period pain was so unbearable I was bedridden for the first day.

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