Stage 3 endo confirmed, no treatment being given.

[kelbelle107]

Hi guys!

Had a laprascopy yesterday that confirmed stage 3 endo and that one of my fallopian tubes was blocked.

At my pre-op consultation they said if it was minor they would treat it there and then and if it was bad they would send me to Colchester for further treatment.

But after my surgery the consultant said they wouldn't do any more surgical treatment until I've finished having children! My husband and I have been trying to conceive our 1st for 12 months now with no success so I can't use contraceptive or hormonal treatment.

I'm destined to suffer this agonising pain for potentially another 2 years before I can have IVF and I don't think I can face it.

Any advice?

[Hidden]

Kelbelle Im so sorry to hear what you're going through!!! I had identical problems. I had been trying to conceive and it wasn't happening. I'd had pelvic pain and had a diagnostic lap back in October when I was diagnosed stage 3 endo and a blocked left Fallopian tube. Mine is a fluid filled tube (hydrosalpinx) and was told it's nigh on impossible to get pregnant naturally with this. My GP wasn't overly interested, even though the pain is awful. I felt so so angry that I was cast aside and offered me no treatment- in fact it was implied that I was wasting their time and it was all in my head. Long story short I started to become my own advocate. I spent hours researching Endometriosis and realised I needed excision surgery with removal of my tube. I found an accredited centre and a specialist surgeon and went to see him. Immediately I felt listened to. Two weeks after the consultation I had surgery (I had it on Monday, bit sore still!!!). He removed the endo by excision and took out the blocked tube. Me and my husband cried as he told us that although it might take longer to get pregnant naturally, there's definitely a chance it'll happen. We plan to have ivf next year if we don't conceive but even if I don't then at least I haven't got to suffer agonising pain until IVF.

I felt so let down by the NHS and to be honest I was so low and depressed with the situation that we dug into our savings and went private. It was pricey- about £7000 but it was worth every penny. The post op pain is minimal compared to the endo pain and my pelvic cavity now feels released of pressure- weird to explain but honestly it's so so so worth it. My surgeon explained that removal of the endo enhances fertility. We thought it was a case of me gritting my teeth in pain until either natural pregnancy or ivf...instead I've had surgery and got a much better chance of naturally conceiving with the huge huge benefit of not having to suffer endo pain!!!

Start pushing for a referral or even just go for a private consultation to get some more information (cost about £200). Thinking of you and honestly you do not have to accept this appalling treatment!!!! Xxxx

[kelbelle107 in reply to Hidden]

Thanks for the reply,

What I don'tunderstand is that he said they wouldn't operate coz it would risk my fertility when all the research I've read says it helps! He said I could be re-referred to him for fertility issues but I would have to go back to my GP for that.

I explained that I miss 2 days of work a month and I was taking so many painkillers already. He said he is confident that I'll get pregnant but I can't help thinking 'what if I dont'

Definitely going to go back to my GP to discuss my options.

[Hidden in reply to kelbelle107]

My Gp was also 'confident' I would get pregnant and that I was worrying for nothing. The specialist surgeon actually laughed when I told him- he said that almost a third of patients having ivf have endo which speaks for itself. Also I think proof of the pudding is in the eating- we weren't getting pregnant so obviously there's a problem. As for your fertility being compromised then I am inclined to question that. Was your surgeon just a general gynaecologist? A lot of the time they don't have the skill to excise it. From my point of view my fertility couldn't get any worse whatever they did because I wasn't getting pregnant anyway. Same as you I was really worried : no one seemed to care about my fertility worries. Endo excision has been proved to improve fertility. I had to pack in my job as like you I had to have a lot of time off. I'm a nurse and want to get back to it asap. It just got to the point where I wanted my life back without pain....you need a second opinion. Ring your doctors asap and get an appointment. Start googling specialist centres in your area, scour endo websites. I know it's so awful how we can get treated but please please please don't just put up with this!! Xxxx

[kelbelle107]

Colchester is my nearest specialist centre which is why I was pleased when they said they would send me there. I am going to as my GP to refer me to colchester and bypass going back to Ipswich.