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Discussion Starter · #1 ·
Hello,
I have posted before, but everyday finding out new info.

I have just been diagnosed with Severe Endo and it has seriously messed up my body. Consultant is shocked one of the worst cases seen.

I have had two laps in space of 5 weeks and a bowel surgeon due to my bowel being plastered to pouch of douglas. Ovaries stuck to bowel. Ovaries twisted around tubes. Had left tube removed as Hydrosplinx found. Right tube in but very swollen

Just seen a copy of the letter from consultant to my gp and I am totally in shock-how bad my body is.

It says IVF best route!! Just got to wait for another apt to see consultant.
I have just had my FSH,LH and Prolactin redone and now waiting for results.
Previously results were April 2009- FSH=7 and April 2011 FSH=5. April 2009-LH=6 and in April 2011=LH 3.

I am very scared as IVF is a new concept for me, like many ladies. I am worried about the damage to my ovaries/eggs.

Would love to talk to someone who is on that waiting game for IVF/waiting to see if can get funding etc.

Thanks xxx
 

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I just wanted to say hello as I have the same condition as you and have been told I need the same operation as you have had.

I had a diagnostic lap and one one side the doctor couldnt even see my ovary and fallopian tube as they were stuck underneath a whole load of bowel and Endo.聽 My Endo only gives me pain one or two days a month and doesnt sound as sever as yours so I've never had it addressed until now.聽 I've just had my second attempt at IVF cancelled, during which I've developed a hydrospainx and a cyst with a daughter cyst in it (I dont even know what that means).聽 I've been told that I need the hydrosalpinx removing as its causing me pain and is leaking, but that its going to be a difficult operation because my tube聽 is wrapped around the ovary and the bowel is stuck too and on top of it, and that they'll probably need a bowel surgeon.聽 I was wondering if you could tell me abit about your operation and how long it took to recover please.聽 I am very scared.聽 聽 I was also told that we will have to move on to donor eggs now but I am so worked up about having to have this operation that I'm not even focusing on that which I really should.

I really hope your eggs are OK.聽 My FSH result was 'normal' but Antral follicle count not good, and I did not respond to the IVF drugs (450ml Menopur).
 

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Sorry, I should have said that if you want to ask me anything I'd be happy to help based on my experiences with IVF.聽 I'm on the waiting game for donor eggs after I get past this operation, but I've done one private cycle and one on the NHS so I might be able to help!
 

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Hey ladies I also have severe endo with the left ovary, tube and bowl as the surgeon called it 'welded' together I will need it separated and removed but my fertility clinic said they could do the ICSI first then remove after having a baby fingers crossed..聽 My clinic said that I could hopefully start treatment the end of March - we are using donor sperm xx
 

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Discussion Starter · #5 ·
Hi CheekyCat.

Sorry to hear you have this horrible disease! Yes, our bodies sound similar with how Endo has affected us.

I was lucky that my consultant managed to do all through lap-key hole. I have 4 weeks off work as was bleeding,low energy and pain. I would also say the time was also needed to get my head around everything.
I am coming to terms with losing tube with hydrospinx and got to keep thinking if it is causing damage and now working its best out.
I was in surgery for 2 and half hours they did alot. But think this is a tempoary measure,as we want children. Waiting for apt in March where will be rescanned and bloods done and hoping can discuss IVF and really need to make sure we can get NHS funding. We should get one go.

Thanks I will def come to you if I have any questions. Just want to get the go ahead for IVF now.

From what I can gather I have been warned may have to have more surgery in future and be opened up!! I guess depends if cysts grow again and endo gets worse.

Wishing you lots of luck. It is scary very scary, but I am just pleased to have a diagnosis and know now why we are having huge problems having a baby.

ps My first AF came 2 weeks after op and very heavy but virtually no pain-amazing!!!!

Oh- I asked about AMH being tested and they said dont worry and FSH normal and not high???

xxx
 

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Thanks Geminimonkey (sorry, I've been away!)
Ooh, that seems a long time recovery with a laparoscopy.聽 I've got a pre-op tomorrow (for a hysteroscopy not the laparotomy yet) so hopefully they can tell me more about recovery times.聽 I wonder why my doctor isnt going for a laparoscopy?聽
 
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