Endometriosis Diary

[Fliss]

I'm utterly in love with my husband today.

Last night we got a voicemail from the car company asking us to confirm their quote for more services or something.

And he said 'bugger that, can't get a new car til we know what's going on with you'

I asked him what he meant. And he said that he couldn't take a new loan for a car (ours is fine, just aging) if he'd had to take out a £10k loan for adoption.

I just love him so much for planning ahead like that. I know I still want to TTC #2, but he's working on the options.

 

[babyvaughan]

Awh that is so so sweet!

 

[Fliss]

Hubs is in a bad way ATM - worried about money and the future and he has no-one he can talk to. I worry for him.

 

[Fliss]

MRI in 2 weeks...

 

[Fliss]

Two babies born in the last 2 days to mamas I am so so happy for. But I'm crying inside. So so broody it hurts.

If I hadn't found out about all my issues id be fine and our basic money issues haven't gone away - but I hate this limbo.

Hate it, hate it, HATE IT!!!!

 

[Fliss]

Oh bloody Nora. I've been in flare up hell all day. What I used to think was an IBS attack - it's not.

Nathan elbowed me in the stomach climbing on to the sofa for his pre-bed cuddle and I shouted so loud I made him cry :'(

I know that TTC #2 will just make this worse overall but it would at least be a POINT to the pain...

 

[Fliss]

Randomly bleeding today. This now scares me as the more I bleed the more adhesions can/could/will form

 

[babyvaughan]

Horrifying period this cycle, came early and was so bad..
I went to OB and demanded a I get a lap to remove the endo, they agreed but
are worried about risks from my previous operations so they are making me wait to
discuss next friday, I have a U/S next thur to make sure everything looks good still.

I've had 2 babies born, a babyshower coming up, and four that just announced they are pg. It's been a hard month!

 

[Fliss]

I had my MRI on Thursday - was sort of cool - waiting time for results now....

 

[babyvaughan]

I'm eager from friday, but also good news I set up our first appointment with infertility specialist

 

[Fliss]

Yes yes YES!!!! Referral agreed - another operation as predicted - with an appointment at the endo clinic prior to talk everything through!!! I am doing cartwheels of joy and happy

 

[babyvaughan]

Doc gave me a surgery date for a Lap! its in two weeks! Also I'm currently late on my cycle how neat if its because i'm pregger's!

 

[Fliss]

That would be fab - I'm sure you wouldn't mind delaying your lap for that reason ;-)

 

[holdontohope]

Hey!

I don't know if I would be of any help... But I do hope to give you a little bit of hope!!!

I have stage 4 endometriosis and it was found on all my reproductive organs (including the inside of my uterus), my bowels, appendix, bladder and up to my stomach. My pain started at age 15 and I had my first surgery at 18 and my third by age 21. I went from stage 2 to stage 4 in a matter of 3 years despite being on continuous birth control and having shots to ad in the healing process. At 23 I got the devastating news that it was now or never if I wanted a baby of my own. Even though I was single, there was no doubt in my mind this is what I wanted.

I did my first round of IVF and got blessed with my baby girl!! I did have a rough pregnancy and my water broke at 35 weeks causing her to be born 5 weeks early... But she is a healthy chubby baby

Anyways... I just wanted to give you a little bit of hope and let you know that there are SO many options out there to having children now a days! Adoption is amazing! So is accepting medical help in achieving a pregnancy of your own.

Don't give up girls!!

If you have any questions please ask!

 

[Fliss]

Nathan was also 5 weeks premature - spontaneous waters breaking at 35+3 - labour starting at 35+4.

I really don't want him to be an only...

So my letter arrived yesterday (well the one I was CC'd in on):

"Following review of the MRI findings and your diagnostic laparoscopy it was decided that she [*I*] needs a laser laparoscopic [joy] excision of severe endometriosis + extensive adhesiolysis at the John Radcliffe Hospital."

There's a bit about them arranging to attend one of their Endometriosis Clinics to discuss the surgical treatment and explain the pros and cons of surgery...

Not entirely sure what that will cover unless it's the whole fertility thing.

Honestly, I feel just as confused as I did before, but it is at least movement in the right direction I suppose...

 

[holdontohope]

So basically they are saying you need surgery for removal of endometriosis and adhesions which is scar tissue caused by endo. This should be covered by your insurance because of your pain. Endometriosis is classified as an infertility disease. But... You technically don't fall into that category yet because you haven't had an issue getting pregnant as of rite now.

 

[Fliss]

I'm in the UK so thankfully this is all free - I know that the consultant my surgeon referred me to is an endo and preserving fertility specialist - I just hope that it's him who has agreed to take me on - but they were really surprised I had Nathan at all... guess he's one of those '1 in X thousand' statistical chances...

But if I've done it once I can surely do it again...

 

[Fliss]

I am in so much pain today. Randomly bleeding. Constipated (though that's not what it IS medically speaking) Nathan just wants to play and I just want to die.

 

[babyvaughan]

My lap is in a week, he explained the incisions and what he is looking for but do you know if they remove the scaring right then and there or do I have to have a second surgery? I've already had several in that area so they are saying its risky because my scarring may only get worse from being cut open. I just can't live in pain anymore!

 

[Fliss]

That one depends - they were "supposed" to do diathermy on me at the same time as my lap if it was severe enough to warrant it - it turned out it was TOO severe so they just patched me up and referred me on.

So my appointment at Mr. C. Becker's Endometriosis Clinic has been confirmed for Monday 23rd June at 14:30 up at the John Radcliffe hospital.

Really pleased.

Any suggestions on questions to ask him ladies?