Emotional rollercoaster I need off!! - Endometriosis UK

Endometriosis UK

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Emotional rollercoaster I need off!!

amanda2kiddies profile image
6 Replies

I all, I wasn't going to post anything but I feel so alone now, so I had my lap on Monday I was nervous and scared! My biggest worry came true no Endo. Even my gyne was shocked. All he found was scarring on my right ovary. I cried and cried just because i was so frustrated I've been in pain for years its getting worse all the time and for eight month I was told everything pointed to Endo, the zoladex worked so I presumed it was Endo. On a positive my gyne has not discharged me he says I have to go back in four weeks and if I'm still in pain (I am) then he will consider taking my right ovary out to see if that helps, the lap scars are okay I had the gas pains in my shoulder's but manageable. I've had no bleeding though which they said I would have, but just my usual crappy pain....i feel so alone now I'm just getting looks of people questioning me. I know what I go through three weeks of the month, I'm just gutted I wanted an answer. Sorry for ranting just feel really crappy 😞 x

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amanda2kiddies
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6 Replies
Bee-74 profile image
Bee-74

Hi Amanda. I'm really surprised by the outcome and I'm sorry you didn't get the answers you were looking for. Firstly where you seen by Bsge centre? If not you should be referred. Zoledex would have made any endo shrink, so can easily be missed by a general gyaenocologist.

I was diagnosed 5yrs ago with minimal endo... Now after pushing for Bsge consultant I have been diagnosed with stage 4. Check out the posts from lindle on this site. Good luck with further investigation and keep strong! It can be a long and frustrating journey. Big hug xxx

ccorti profile image
ccorti

I'm so sorry to hear you didn't get the answers you need. I had very minimal bleeding after my lap even when taking out lots of endo - so I wouldn't put too much stock into that one fact. Was your lap done at a BSGE centre? - sometimes general gynae miss out on endo. One positive is that your gynae is not going to discharge you, which is very good as in my experience doctors love fobbing you off at a negative result. If you are under general gynae, I would be hesitant to just let them take out the ovary. Have they done a dye test to check how viable it is? I'm not sure about your situation, but I'm very attached to my ovaries as I don't have kids and desperately want them. I was told i could lose my left one after draining of endometriomas and insisted they do a dye test before they just take it out. I think your first action should be to make sure you are under and endo specialist - only that will guarantee you the care you deserve, Chin up xxx

JeanOsborne profile image
JeanOsborne

Hi Hun , I agree that you need to get a referral to a BSGE centre. I would be questioning where the scarring came from, as it wouldn't occur by my magic. It sounds like they just didn't recognise endo. Please push for that referral. Your GP can do it . Good luck Hun and hope your recovery goes well.

Tboag profile image
Tboag

I agree you should be referred to a bsge specialist centre, I had a lap last march diagnosed with mild endo, and adenomyosis general gyne excised endo and I then had a hysterectomy for adenomyosis in july. I'm now awaiting another laparoscopy with a bsge specialist, as I believe that my gyne has missed something or not dealt with it correctly, xxx

amanda2kiddies profile image
amanda2kiddies

hi ladies, thank you al for replying it makes me feel better, I have not been referred to a bsge center, although the gyne has a really good reputation when it comes to Endo, he's abit of a dick but knows his stuff. That's why I taking hes not discharged me yet is a good thing. I do get pain more on my right side, so it could just be scar tissue, I had a molar pregnancy ten years ago, my hormone levels were that high I ended up need a op to remove alot of cysts that were bleeding into each other and into my ovary, they did tel me at the time they thought I would need a hysterectomy and remove the damaged ovary as well but when I came round they said the damage will heal, maybe it didn't. I'm not very attached to my ovaries I have to lovely kiddies and no more on the cards. I had bad spd when carrying my second and told not to have anymore as the strain would shatter my pelvis!! So no more children. The pain is alot on my right side and when I ovulate the pain is horrendous and then follows through to the rest of the month I do get about a week where everything is manageable and I don't have to pop pills. I do worry about adeno incase I have that,, but I'm trying to keep positive, its hard when I've told people for 8months I finally have an answer and yet I don't.....again thank you for reply it helps me process everything alot better xx

amanda2kiddies profile image
amanda2kiddies

just to add, I always have had irregular periods they always lasted 7fays really heavy, now on on for not even two days, it seems the lighter or non existent period my pain is considerably worse, and my symptoms are now at the point of everyday, today I am healing nicely from the lap the glue is nearly gone. And the swelling has gone down still no spotting. But I feel like crap ad per usual abit flu like just crap uncomfortable as usual and the dull achy pain in my pelvis has reared its head again, and then there's the pain in my right side which is like hot pokers being shoved up me. I have turned into a miserable witch I think its safe to say, everything is going to pot and everything is weighing me down my kids doesn't understand and they shouldn't need to know why mummy is soo tired and cant play on the floor with them. And my hubby Is at his wits end and doesn't even know what to say to me.....its shite (excuse language)

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