Endo & IVF

[Claire8871]

hey there, I’ve recently been diagnosed with endometriosis I’ve had the operation in November, was told my tubes are blocked she removed as much as the endometriosis as she could my bowel was stuck together, my left ovary was stuck to the back of my body & my right tube was twisted. I was told if I wanted anymore kids I would have to have IVF, i had my son in 2004 when I was 16, I’ve struggled for 18 years to get pregnant & wanted some help hence pushing for this for years, but too be told “ yeah you have it but you can’t get pregnant & need to pay out 1000’s to have another baby “ it feels like a slap in the face, I know there are rules about ivf & already having children, but I just think this isn’t fair on the women who didn’t ask for this condition & basically telling you, you can only have 1 child in your life. Has anyone got any ideas or help with this situation please not asking for miracles just some advice on who I can turn to or see someone about this I’m 37 this year & my time is drastically running out

Thank you

[Eeshpeesh1994]

Hi Claire. I'm so sorry you're going through this. I was diagnosed at stage 4 in October 2023 at 29, years of pain etc. The same story that goes round. I have a frozen pelvis, adenomyosis and both tubes blocked with an obliterated pouch.

We had tried for a while with no success and this made sense after the surgery. We've been through two rounds of IVF that were unsuccessful - the second extremely traumatic resulting in hospital.

It's something you need to consider massively as it's very intense, a very low success rate (but not impossible!) and extremely emotional marathon especially if you have to pay.

I don't think that's the news you want to hear but I don't think from what I know that there are any other options unless anywhere offers funding.

I wish you all the luck in whatever the future may hold for you and hope that your pain is controlled at least.

[Claire8871 in reply to Eeshpeesh1994]

Hey hunnie,

It’s such a shame we have to go through this, I’m 6 months post op & my symptoms are back, I know the operation isn’t a cure but I didn’t think it would be back so soon, I was ignored for 15 years told I was constipated etc was only when a cyst burst ( I couldn’t get up off the floor for 4 hours ) they took me seriously my new dr listened I thought finally I may get some where, my sister has the same condition & she also had surgery to move endo, 6 months later she was rushed into hospital & we found out she had an ectopic pregnancy & had to have a tube taken away I felt horrible for her, a year later she found out she was pregnant naturally ( it hurt my heart ) but I was over the moon & now have a beautiful niece who’s 4, my sister helped me & pushed with me for the drs to listen to me.

IVF is soo expensive & I know I can’t afford it the amount of times my son has asked me to have him a brother or sister growing up it was heart breaking when he was telling me he hated being an only child, I was trying & trying to the point my mental health was the worst it’s ever been,

I was soooo excited to have this operation then to be told if I want my tubes unblocked I’d have to pay for it, I thought she would of done this during the operation she was in there anyway 😭 so I’m left with blocked tubes adhesions all over my liver & now the pains are starting again, I feel like I’ve failed as a woman not to mention as a mother I’ve been told to think about having my womb taking away because of the amount of damage there is but I can’t get my head around the fact of not being a woman in that sense anymore, I’m 37 this year & being told to think about whether I want to be pushed into early menopause is horrible,

I think I may have to give up the idea of ever having anymore children & face facts.

Xxx

[Eeshpeesh1994 in reply to Claire8871]

Hi Claire. It is absolutely awful, I'm so sorry. I'm on the list for robotic excision surgery with a specialist and this will involve removing my tubes, potential ovaries and a stoma.

We have one miracle embryo stored in the freezer which I don't think we'll be able to use which is heart breaking. For me, I've had three admissions in the last year and have finally come to a combination of hormone drugs that have been able to stop my periods until I have surgery as I've already had drains etc. For so much internal bleeding.

I want a child more than anything but first and foremost I need to be healthy as possible and if adoption is the route we need to take that will be our next steps. It is so unfair - my husband and I have been together for 14 years but we have come to terms with life is so precious and we will be parents somehow someday. If it's saving another child then that's what we'll do but that isn't the right choice for everyone.

I don't know why they're saying you need to pay for your tubes to be unblocked? Can you try to get a referral to en endo specialist? There's a wait but it's worth it or £200 roughly to see someone privately just for answers and quickly.

[Claire8871 in reply to Eeshpeesh1994]

Eeeee hunnie that sounds so traumatic im so sorry your going through that, what ever happens at least us women have got each other, I’m glad I’ve got my sister to lean on because i don’t know what I’d do without someone to talk to.

I was told the unblocking of the tubes is part of ivf & I need to pay for it, I don’t mind paying for it if that’s what it takes but I don’t have the funds for a full round ivf I think I’ve got 2000 in savings that’s doesn’t even touch the sides for ivf, I’m constantly worried my anxiety is bad & now the worry that I might have to have my womb removed is too much to get used to, I just want my tubes unblocked the endo specialist told me unblocking them would give me more of a chance & I instantly thought can’t you just unblock them while your doing surgery but she said no it’s part of ivf & id have to pay to have that done 🤷🏻‍♀️ xx

[Eeshpeesh1994 in reply to Claire8871]

Hmmmm that is not information I've heard before but my tubes are very much past unblocking

The other thing to say is you can unblock the tubes but they can fill right back up again within a couple of months so I'd consider that too. They won't do surgery just for fertility for free I think it's always down to pain which I can understand as endometriosis, especially DIE can come back and no one knows where or how etc.

I'm so sorry I can't offer any words of help other than take one day at a time and really find out all of the information to your particular case. Sometimes blocked tubes can have. Massive impact on IVF not working too because they can leak fluid or blood into the uterus when swollen which creates a very bad environment for the embryo. There's so many factors to consider but perhaps getting a second opinion would be the best next step?

If it helps... We have one more round of IVF which we have decided against because everything has been so traumatic. It's weighing up what is the most important in terms of your quality. It's amazing how my mindset has changed in 2 years. There's nothing more I want in the world than my own child, however at the expense of what? Definitely find out all the info you can from another person I think and go from there

[C-a-t-m-u-m in reply to Eeshpeesh1994]

I just wanted to wish you all the best, my sister in law has adopted 4 babies over the last 5 years! It hasn’t been easy but neither is ivf. I have 4 beautiful nieces and nephews and wouldn’t change any of them. She had 5 years of failed ivf and choose adoption xx

[C-a-t-m-u-m]

I also have endometriosis I have a little boy from a round of ivf so definitely recommend although it is expensive! My little boy was on the NHS because I didn’t have any more children. But spent over £15k trying for a sibling with no success. It can work I have my miracle but it is a rollacoaster . Wishing you all the best x