Seeking insight of people's pregnancy/birth with Stage 4 Endometriosis IVF. Anything and everything...

[Endofuturemum]

Hello everyone, Iv just signed up to mumsnet and would be beyond grateful for any advice that relates to my situation. I have stage 4 endometriosis that's too bad for excision surgery due to a frozen pelvic with adhesions. I need to have a hysterectomy at some point with all the symptoms it causes me, and sadly my only real chance for a baby is now IVF asap. Did anyone have any complications or have helpful advice with IVF and birth/pregnancy? Iv heard a few birth stories that sound awful. Just want to make sure I'm making the very best decisions possible for me and hopefully... baby.
Thank you 😊

Hi
Sorry I haven't had any births as of yet but your endo story is similar to mine. Don't lose hope. Ask your surgeon to preserve your fertility.

I got diagnosed with stage 4 endo and die when I was 34, like you, I had a frozen pelvic, my left side tube and ovaries where attached to my womb, my kidneys started to get tangled, my bladder had endo, my intestines all covered (so much so that my doc said I might need a bag temporarily) and I had adhesion on my parts- all in the muscle. I hadn't met my husband then, so there was no chance of kids before. My surgeon worked to preserve my fertility.
I helped myself by doing caster oil packs for the month before my surgery (that made such a big difference and helped so much)
My surgeon suggested going on a medically induced menopause. Which I did. It helps when they cut you open.
Operation was a success, although I did lose my left tube.

I got married a year later. I thought i wouldn't conceive naturally, but within a year, I have done 3 times. Unfortunately, first was a cp, and second was a mmc. I'm currently 4 weeks pregnant and praying I have a healthy baby.

So there is hope, I know it doesn't seem like it (I felt like I lost my chance of being a mama when I had been diagnosed) but keep faith and keep positive and do the best you can for yourself.

Also, look at vitamins that help with endo and fertility. I take vitamin d, iron, folic acid, dha. Was taking coq10 and angus cactus but stopped now I'm pregnant.

Good luck, I pray it all works out for you, dont lose hope 🙏

Thank you so much for your story, so happy for you. Where are you from, Im Uk. My surgeon tried to operate but said im so badly fused together that I was bleeding too much. He also said ivf is my only chance. Getting pregnant naturally wow huge congratulations! Wishing you health and happiness on your journey 😀

I'm from the UK too. Did you try shutting your system down by going on medically induced menopause? I think that made a big difference.
I remember my pre-op and the nurse was shocked that I was getting so much done in one surgery, I told her I wanted to get it over and done in one go. Took over 8 hours.
Try caster oil packs, they help with breaking down scar tissues and adhesions in my body. They helped me alot.
Maybe look for another surgeons opinion?
When I asked my surgeon about getting pregnant naturally, he said it can happen and they can't predict if we can or cannot and just to keep trying.

Good luck x I pray your journey is easy. Keep a positive outlook- it really makes such a difference. Tell yourself that you can do this and your body is strong enough 🙏

I went on Zolodex. Didn't feel any difference. My first period afterwards I was rushed into hospital because I felt like I was having a heart attack. A very severr withdrawal. I will certainly try castor oil thank you! Were your tubes blocke? Yours possibly sounds even worse than mine so I don't see why I can't have excision surgery. How did they know that things had improved enough for the surgery? Very sorry you had to go through what you have to get here x

Did they offer the pre menopause? That's what helped my surgery be a success. My left tube was blocked and very damaged, they couldn't save it so they removed it in surgery.
The caster oil packs helped because my surgeon said that my digestive system was better than what my mri showed.
I had 2 large cysts on my left ovary, which they removed too.
Have they given reason why you can't have surgery? You need to self advocate for your health.
I was ok throughout as originally they thought I had womb cancer. Endometriosis was a God send compared to that! So it made it easier for me to deal with 🙏

Haven't been offered pre menopause. Is that more gentle on the system? They shut my system down for 3 months with Hormone injection each month but did it quite a while before my surgery to try and relieve symptoms. The surgeon said when he tried to sort out the scar tissue everything was so tightly fused that I was bleedning too much to operate. I'm starting appointments at a fertility hospital so they might be able to offer a more specialist surgeon?
Well... my other part of this is my previous surgeon who did not think I had endo and didn't want to give me a lap. I begged her, she eventually let me and said all she found was scar tissue and fibroids. So currently with the solicitors with my prolonged wrong diagnosis and infertility. 3 years ago my tubes were not blocked in my dye test so she's cost me alot. Ended up changing gp explaining everything and eventually got me in at a private hospital via nhs 9 months later to find out I did actually have it. The surgeon gave me a tissue and said I need ivf urgently. I was unsure about caster oil as there isn't much evidence of it working but clearly it can help! Omg that is so scary. Thank god you didn't!
And now expecting 😁
My endo has made me very unwell so I am nervous about carrying a baby. Were you ill with your endo? If so did surgery relieve your symptoms?

I think it might be the same thing- did you do that right up until your surgery and a month after surgery? Try that with the caster oil packs. I also got specialized massages to help with that area, once a week.

That's so bad for a doc-
, especially a female, to disregard your issues! Good you are taking it further, hopefully she will learn not to be dismissive to other women. It's sad that we have to fight for our medical rights like that!

Are you taking any supplements to help with endo?

My endo was so painful before my surgery, I was literally bedridden for a week but after surgery I'm so much better! I did go on the mini pill before marriage but for over a year now, I've only taken supplements and so far so good!

I have become a somewhat expert in reading my blood results and body to figure out what works for me. Google is me best friend lol.

Don't be nervous about carrying a baby, most symptoms go away when pregnant.

I only took Zolodex for 3 months way before my surgery to try and relieve pain. It took 2 months for my period to stop but didn't make any difference for me other than this. When I started withdrawing from it I got rushed into hospital, I thought my heart was stopping. Was a very scary experience and pray I never have again. Iv cut 80% of gluten from my diet and am on duloxetine and my periods have majorly improved. Which hospital did you have your surgery? Mine was misdiagnosed at DRI and diagnosed with the stage 4 endo at Thorbury Sheffield. I'm now due to have pelvic and transvaginal scans and going to Jessops Fertility hospital in Sheff to see what they suggest.