Posted: Sat Dec 01, 2012 9:28 am
Post subject: Endometriosis
Just wondered if any of you Ladies who had endo knew if it can just affect your tubes without showing any signs of being elsewhere
The reason I ask is I have a family history of endo, my mum and both sisters had it, my middle sis to the point she had a hysterectomy at 32 my Mum had one in her early forties .
Now I don't have the classic symptoms, my periods are often totally painless but can be heavy but not very long, I've had 4 ops involving laproscopy in the last 2 and a bit years and there's no sign of endo in my abdomen and my ovaries are completely clear BUT.... I do sometimes have deep pain during sex (like being kicked in the stomach ) and during AF find it painful when my bladders full and it aches when peeing (which I've read can be endo related) I'm also obviously oestrogen dominant because I get horrendous pmt and also get moody just before Ov
My only tube is now totally blocked about a third of the way along, but i was told after my first diagnostic lap that it had a proximal blockage (right at the uterus on the pics it was clear there was no dye fill at all )
I was told this again last November exact same thing (both were done at the end of a cycle just before AF ), so when I was due to have a cannulation this October to try and clear this proximal blockage , I ended up taking Noresthisterone for 3 weeks to make sure my AF wasn't due when I had my op, (Noresthisterone is high dose progesterone) and when I did have my AF it was horrendous, my lining was so thick it came out in one piece (a decidual cast )like an upside down triangle, but I did notice that on one corner of it there was an extra bit just in the right place and the exact shape of the entrance to a tube, it even suddenly narrowed and carried on for about a 12mm
I was very surprised as I didn't think womb lining was actually supposed to grow into the tube ?
When I had my cannulation 10 days later the proximal blockage was gone
no explanation was given for this but my theory is that the proximal blockage was that tiny bit that I saw attached to the decidual cast , and was probably overgrown womb lining ie. endo
Now i don't get a follow up so can't ask the surgeon questions , but am now wondering if this other blockage further along could possibly be tubal endo ?
Has anyone ever been told they just had endo in their tube/s
When I was first TTC I took soy a lot , in quite high doses, which boosts your oestrogen and i'm wondering if this could have trigered it , as endo "feeds" off oestrogen
I've recently started taking Agnus Castus, more for PMT than anything else as I've heard it can reduce oestrogen and increase progesterone, but after being bored this morning and googling endo treatments it seems some people recommend agnus for that too
Has anyone tried it for that
I suppose i'm wondering if the high dose progesterone before my cannulation shrunk whatever was in my tube enough to make some of it come out
I'd also been taking serrapeptase which is supposed to help clear dead tissue and blockages from ateries and tubes
Obviously the blockage now could actually be scarring not endo and could be why there's no sign of anything in my abdomen as it wouldn't be able to get out ( I suppose even if it was endo it could stop other bits of endo getting out ) but if there's even the smallest chance it is a bit of endo in my tube then I was hoping you Ladies might have a suggestion for how to shrink it
I can't really ask for progesterone contraceptives because my GP knows I can't get pregnant xxx
Posted: Sat Dec 01, 2012 11:59 am
I've got endometriosis and have never had any symptoms. I don't know any details at all though like you've described. I had a laparoscopy last September which diagnosed it and the consultant told me that one tube was blocked. He said there was a lot of scarring about but didn't go into detail where. I was treated for 6 months with Zoladex injections which put me into a false menopause, and got my first ever BFP 3 months after my first AF.
I have never thought of my periods as particularly painful, but I guess everyone has different pain thresholds so hard to know, but I could count on one hand the times I've had to take pain relief. They are usually heavy for about 2 days then lighter for 3-4 days.
Posted: Sun Dec 02, 2012 8:11 am
Thanks for that Heath , its great you got your BFP after treatment
I suppose your consultant must have seen something on the lap that told them you had it MNy AF's are very similar to yours but I know my sis had the hysterectomy in the end because hers were so painful and long and heavy that seh was permanently aneamic
My sis doesn't know when heres actually started but she had 7 boys so it obviously didn't interefere with her getting pregnant if she had it from being young
I suppose it depends where it grows what effect it has
My blocked tube now is being put down to scarring from the reversal, which i knew the proximal blockage wasn't as it was in totally the wrong place, but I won't get any more medical help now so i'm just looking for natural things i can try
Of course it could actually be scarring in which case nothing will help but it can't hurt to try
Zoladex reduces oestrogen levels doesn't it ? Maybe if I can find something that does that naturally it might help
Thank you again xx
Posted: Wed Dec 05, 2012 12:37 pm
I've been thinking about endo as I have very irregular af's and the only time I get this pain is always right before and during my period. I know this is going to sound odd but I get this pain around my left side and it feels like my lung/chest is very painful and also get a funny sensation in that area almost like trickling. As I'm so irregular each time I get it I start off thinking its a chest infection. My spine/ back also hurts and is sensitive to touch at the same time (upper back). Then about 12 days after it starts I get my AF once my AF has finished which is always light and not painful, the pains all go.
I spoke to my doctor recently about it and he discredited it completely. Yes perhaps I'm barking up the wrong tree but I can't think what else it can be.
Posted: Wed Dec 05, 2012 12:46 pm
You can get what docs call referred pain somewhere else Banoffee if you have something in your abdomen
Thats why you get shoulder tip pain after abdominal ops, from the pressure on the underside of your diaphragm pressing on a nerve, women having ectopics often get it as well , so its possible endo in certain places could cause nerve pain somewhere else
It does seem like it can take ages to get a proper diagnosis for endo though, I know they only took my sis seriously after she started having the most horrendous AF's and she'd had pain for years xx
Posted: Wed Dec 05, 2012 2:25 pm
couldnt you ask for pill for pmt reasons saying that sort worked best for you in the past
or ask for the ones you want on here incase someone on this site got some left