Severe Endo diagnosis

[SarahBridget92]

hello everyone,

I was diagnosed with endo in November last year - before then I was told I had PCOS and have been going through scans for 2/3 years as my husband and I have been trying to conceive.

In March I had my first Lap surgery to remove a endo cyst on my right ovary. When I woke from the surgery the surgeon told me I had very bad endometriosis.

since the surgery I’ve had an ultrasound which showed more cysts have appeared on both ovaries - I’ve just had an MRI scan and awaiting my results.

I feel absolutely heartbroken at the moment. The stress and upset this has caused is just horrible! Having a baby has never felt so distant. Im on the list for IVF but this was before my op…not sure what our situation/chances are now.

Has anyone else gone through a similar experience with infertility?

[D1245]

Hi Sarah,

I was diagnosed with severe endometriosis in 2018. I was 24 at the time and told I would never have biological children. We went through ivf in 2021 and miscarried BUT I had surgery prior to ivf to clip my tube that was filled with fluid. Fast forward 10 months and I found out I was pregnant naturally which is something that had never happened to me prior to this despite trying for a long time. I’m now overdue and due to meet my baby latest next week. Please don’t give up hope, as cliche as that sounds. It is a difficult road when it comes to endometriosis and infertility but it isn’t an impossible one.

If you’re due to start ivf treatment it may be worth joining the fertility network on here as people will post a lot about it and I got a lot of advice from others which was helpful on my journey.

Please take care of yourself and you can always message questions if you have any, hopefully I can have some answers but if not others will too 😊 good luck x

[Endosufferer1 in reply to D1245]

Hi! I'm 24 now😅 with what seems like severe endo. Did you get endo on your lungs (thoracic endometriosis)? How long was your surgery? How many surgeries did you need at 24? Did it show on a MRI? When did your periods start to get severe endo at 24?

Congratulations 👏🎉 (hope it's a boy 😅).

[D1245 in reply to Endosufferer1]

ah I’m sorry, it’s such a pain! Not thoracic endo, I had very damaged tube and everything was pretty much stuck, they couldn’t remove my tube due to this so they just clipped it.

I’ve had 3 surgeries so far. My first found nothing (still not convinced!), second found the endo and third was to clip the tube ready for ivf in 2021. It didn’t show on an MRI, they even asked if I wanted CBT initially (like it was a psychological thing!!!) Sadly started periods at 10, that’s so tiny the more I think about it and I bled through clothes, couldn’t get out of bed and was drained in teenage years but I was just ignored for a long time.

Thank you for the congrats, I’m having a girl. Despite what they say about the potential genetic factor, I’m the only woman in my family (other than those who married in) with any kind of Gynae issue so I’m hoping she’ll be fine too! 😊

[Endosufferer1 in reply to D1245]

That's great, for my part, it's running in the family (but before it was part of taboo) and getting worse from generation to generation (compared to the rest of my family, I'm the one suffering the most) . Make sure your daughter eats no lactose, soja (to keep a good balance of hormones) and avoids too much stress and when she's older on her teens to do cures of noni juice (very important to get all chances for her not to get the same!).You never had pain in your ribs/hips/breast/shortness of breath/coughing? I bet I'm not that lucky at the end and I guess had too much stress due to caring for relatives with cancer which exacerbated things (endo loves stress). That's going to be funny prior to surgery, during surgery and after surgery, it's guaranteed this time OMG.😅😅😅

I don't think for my part they won't find anything, I'm too much disabled from endo for them to be that blind. For your first laparoscopy, was it done by THE specialist for endo on the day of your surgery?

[D1245 in reply to Endosufferer1]

I’m sorry to hear about everything you’ve been through. I hope you get some resolution through surgeries and a bit of a break!! I have my fingers crossed for you.

All I can say for my daughter is I’ve advocated and fought for myself for years, for her ill be persistent and get her the help she needs as I have the experience to know what’s what. Sadly none of my surgeries were by specialists other than my final one who was a specialist in fertility and endo.

Best of luck with surgery!

[Endosufferer1 in reply to D1245]

Thank you very much! 💓💓💓 I had an appendicitis caused by endo last year on my appendix (I refused to go to the emergencies because I knew they would make things worse as they're not specialised and was able to treat naturally the appendicitis using natural remedies like bentonite clay). For sure, I only want specialised people, don't want to end up with limbs being at the wrong place figuratively speaking.😅😅

[Avourneen in reply to Endosufferer1]

Soya is meant to be really bad for endo as it increases eostrogens.

endo-resolved.com/why-soy-i...

[SarahBridget92 in reply to D1245]

hello, thanks so much for sharing your story too! When you’re first diagnosed it can be a really lonely time, but hearing from ladies in a similar situation is really reassuring.

Congratulations on your baby 🥰 x

[Ellie1988]

having some endo removed surgically, could increase youre chances. So dont loose hope, keep a good weight and diet, preconcetion vitamins and keep trying.

[Staples7]

Hi Sarah,

I have stage 4 severe endometriosis found out during my laparoscopic excision surgery. 9 months after my surgery I froze my eggs and did a frozen embryo transfer. I got pregnant on the first round. I did ivf again in April, and currently pregnant. Before they did it I had to wait for a bleeding cyst to go away on my left ovary, which it did when I was on 2 months on birth control. I’m writing this to give you hope and positivity. I know how hard it is to hear that news and so desperate to have a baby. Sending prayers your way.

[SarahBridget92 in reply to Staples7]

hello, thanks for the comment. It’s definitely reassuring that other woman have been in the same boat and have been successful.

It’s a long old road but hopefully we’ll get there in the future 🤞

[Staples7]

Best of luck to you! ❤️🙏🏻