Hi, I'm Lyn and I have endometriosis...

Hi everyone

I have just come across this forum searching for information about Endometriosis, so thought I would introduce myself. I’m 29 and was diagnosed with endometriosis on the 17th March 2005.

While I had not been TTC at the time, I was sent to the OBGYN for a laparascopy to investigate my horrid periods. I honestly went in thinking they would find nothing and would tell me it was all in my head and I was just unlucky. In fact, the opposite happened and the doc told me I had severe endometriosis. My left ovary was attached to my bowel and there was endo throughout my pelvis, in the pouch of Douglas, all over my ovaries and uterus. They cleared it out during the surgery, however the most upsetting fact was that I was told I would need to have IVF for a pregnancy as both of my tubes were completely blocked (discovered from the doc doing the dye tests) due to the endo scarring. After seeing a fertility specialist, I apparently have about a 30% chance of conceiving which is better than nothing as the OBGYN told me I would not have much chance at all.

I chose not to take any of the drugs and treatments after the surgery and immediately stopped taking the pill (I thought I would not need it for contraception purposes anymore!) and just focused on having a healthy lifestyle. My pain virtually disappeared after the laparoscopy which I was amazed at because ever since day one of my periods I had had 20/10 pain (the gyn said I have probably had endo since then!). In the last 6 months my pain started to creep back again along with the mid cycle (more like all over the cycle) spotting so I went back onto the pill but found I did not like the side effects after having been off it for over a year. So now I am off it again and seeing how it goes, not so bad so far.

Anyway, throughout my drama, I was looking forward to trying to start a family and wanted to start IVF as soon but the other half did not want to. We are now no longer together as this was a big factor that pulled us apart. He said he wanted kids, then said he didn’t and then when I found out I couldn’t, he changed his mind again and said he did. I think he was more confused than I was! But a few months after I found out he wasn’t quite honest with his vows if you know what I mean and I guess that was the beginning of the end of us.

I think it is all worked out for the best though because now I have a wonderful loving partner who really appreciates me and knows all about my endometriosis and even though we are not yet at the stage of starting a family, I know he will be there for me if we have to go through IVF one day.

Well, that’s my story, sorry for long ramble. I am always keen to read about endometriosis and other people’s stories and how they are coping with it. I have read Dr Susan Evan’s book ‘Endometriosis and Other Pelvic Pain’ so many times always trying to find more information out of it. I just want to give my body the best chance of conceiving when the time comes.

It has been interesting reading all the threads so far.

Lynny

Hi Lynny

Welcome to the BB forum... you will find so much support from us here...

I too like yourself have nearly the exact some endo as you, except my tubes are not blocked. However, my left ovary was adhered to my bowel and i had endo all over my ovaries with the right ovary requiring some major surgery to it. I also had endo on my bladder too. I had two major ops to remove my endo last year, one for the bladder and one for the bowel. In the end they took 6 cm of bladder and 20 cms of bowel from me.

My endo went undiagnosed and i actually had IVF prior to it being diganosed, and of course it didn't work with all that endo in there. I have had a very exhausting two years in the way of TTC.

I was lucky to see a ECCA surgeon at St Lukes Hospital in Sydney. It cost my DH and I a huge amount for all my ops, as these ECCA surgeons cut the endo they don't burn it, which prevents it in most cases from coming back.

Don't be to stressed yet mate about the IVF... it is such a common thing these days and many woman undergo it with very succesful outcomes. You only have to flick through these forums to see how many do succeed and how many are undergoing treatment.

I wish you all the best and look forward to seeing you around...

Leis xx

hi Lyn,
Im only 24 but i know what your going thru. I've only just found this site and the support is amazing. Theres finally people who understand what your going through! As if its not hard enough being told you might have problems having kids, having an unsupportive partner makes it worse. My now ex fiance left me four months before our wedding when he found out i might not be able to have kids after telling me he never wanted them. Im so glad you have now found someone who loves you forn you and is supportive. Im sure everything will turn out for the best. XX

Welcome to BellyBelly Lynny.

When I was first diagnosed with Endo I had no idea what it even was so the first thing I did was join the Endo Association of Vic (I am in SA and there wasn't one here at the time) through them I got a book called Explaining Endometriosis which really helped me to understand the condition.

I too used to have severe pain with periods from day 1 and my surgeon also told me that I had probably had Endo since the very early days as well. I was 22 when I was diagnosed. Thankfully during dye studies at the age of 24 my fallopian tubes were clear and my husband and I have gone on to have 3 beautiful boys, with the newest addition being born 2wks ago. I am now 30.

Love