Infertility with Scleroderma & Raynauds?

[kayray87]

Hi all, I was diagnosed with limited systemic sclerosis two years ago. Also have severe Raynauds and Hashimotos. I've recently been told that my eggs were so bad they were falling apart when trying to be fertilised through IVF. We've just given up after five failed rounds. No one can give me an answer and say I'm very unlucky given I'm 35 years old. Has anyone had a similar experience?

Thanks in advance

[Buttsy]

Hi,

Sorry to hear about your struggle,

I like you have systemic sclerosis, fibromyalgia,Raynauds and under active thyroid. I have just been diagnosed with endometriosis at 55.I also suffer with other gynaecology problems.

May I ask ,do you have any signs of endometriosis ?

Only ask as I know this can cause fertility issues.

Hope you get some answers .

[kayray87 in reply to Buttsy]

Hi Buttsy, Thanks so much for your response ❤️

I have no endo symptoms but went to see a specialist as I heard it can sometimes be silent. He confirmed I have no deep infiltrating endo and said I could have small patches at most but this wouldn't have much affect. You're right that I think a lot of fertility problems are caused by endo. I hope you're coping ok with yours, it really sounds like horrendous pain 😞

[Midgebite21]

Im so sorry to read about your struggles, 5 failed attempts is so much grief for you to go through. I’m really not sure if scleroderma can affect the quality of your eggs but I do know that it can definitely increase risk of miscarriages and premature birth. It’s because the scleroderma affects the quality of the placenta as this is a very vascular structure and we know that scleroderma affects the circulation. My scleroderma was diagnosed very early ( 8 weeks) into my pregnancy with my second child (she will be 20 this year). We had no issues conceiving either children. I was monitored very closely by my obstetrician and had weekly growth scans. She was much smaller than my son ( first born) and during my labour that was induced my placenta ruptured as it couldn’t cope. It was a very traumatic delivery requiring a section under general anaesthetic (so my husband wasn’t allowed to witness her delivery). I felt so very ill all the way through my pregnancy and had ulcers on 3 of my fingers that we decided not to try again. We were so lucky anyway to have one of each.

Are there any other avenues to having a child you may go down? Our neighbours have just adopted a beautiful little 3 year old girl. I know it’s not the same as your own baby but maybe an option.

[kayray87 in reply to Midgebite21]

Hi Midgebite21, really appreciate your response, thank you. I'm so sorry to hear about your traumatic pregnancy and birth. It's good to know that if we ever have a surprise miracle that I should be monitored closely. Yes it's a lot of grief to deal with but at the end of the day I have such a strong longing to be a mother that my genetics less important to me. We've heard that adoption is a very lengthly and tough process and we're not sure we could endure this on top of what's already been a very long and difficult time. Not at the moment anyway. We're also lucky that egg donation is also an option today but again there is a lot to consider and it's something we'd need to thing long and hard about. Thanks again for your comment ❤️

[Midgebite21 in reply to kayray87]

I know it’s easy for me to say but if it’s a long process start it now. Don’t wait. Surely you can stop it if you change your mind.

[Redcurrant7]

Hi Kayray,

Oh my god I'm so sorry to hear of your struggles. It makes me even more sad because I'm 34, have limited cutaneous systemic sclerosis with raynauds and was diagnosed 5 years ago.

I'm actually in early stage of pregnancy and had no problems at all conceiving with scleroderma. In fact, we did not plan starting a family, had one 'accident' which resulted in pregnancy. 😳

2 years ago I was talking to my systemic sclerosis team about pregnancy, chances to get pregnant and having a successful delivery. I only asked them out of curiosity because my partner and I were undecisive if we wanted kids and what the risks could be with increasing age. I also struggle with vaginally dryness which is related to scleroderma.

Back then they told me that there are some smaller studies suggesting that it can be harder for women with systemic sclerosis to conceive and high-risk pregnancies and miscarriage risks are slightly higher than in the 'normal healthy' population. But they also said that everyone is different with potentially different symptoms and additional diseases.

I would strongly suggest you speak to different doctors to find out if there is a reason why your eggs are poor quality at the moment and if there is anything you can do to improve quality. If this is caused by a specific disease or symptom they might be able to give you valuable recommendations or even medication you need. Speak to your scleroderma team, doctor treating hashimoto, gynaecologist etc. Get as much information as possible.

Don't give up and feel hugged by me. 🫂

[Redcurrant7 in reply to Redcurrant7]

P.S. If really nothing helps maybe you wanna think of adopting a child as Midgebite suggested?

It might not have your DNA but it is usually an unwanted child (or tragic circumstances in the family). Every child is innocent and wants to be part of a family, wants to fell protected and wants to be loved.

And you have so much love to give ❤️

But that's obviously your own decision and whatever you do no-one should judge.

[kayray87 in reply to Redcurrant7]

Hi Redcurrant7, thank you so much for your response and congratulations on your pregnancy! ❤️It's been very difficult to get any answers as to why this has happened. Like you I was told by my rheumatologist and fertility doctor that they couldn't see any reason why I couldn't get pregnant. I have plenty of eggs left too so it was a shock to hear that they are of no use when we did IVF. I seem to be a bit of an enigma. I suppose it's still an area where not a lot of research has been done 🤷 we are definitely going to explore other avenues as I'm struggling to see a life without children and find it very painful to be around kids at the moment with the grief 😞

[SunnyD1]

Hello 👋 Sorry to hear of your struggle with IVF. I have limited cutaneous systemic sclerosis with Raynaud's. My husband and I tried IVF in 2021 at aged 35, which they class as old. I only had 3 follicles so they said chances extremely low and sadly we didn't have any luck as they didn't grow to the size required and actually got smaller over time. This doesn't help you much as I know your situation is different but to this day we haven't got any proper answers as to why this happened and it can be frustrating! I have given up. I have read that this condition can affect fertility! Had I known this earlier I may have frozen my eggs. I have had the condition since 2005.

I wish you all the best and hope that there are answers for you to help you move forwards. 😊

[kayray87 in reply to SunnyD1]

Hi Sunnyd1, thank you so much for your reply and I'm so sorry to hear about your story. I feel your pain and I wouldn't wish it on anyone. I'm finding life very difficult at the moment as there are triggers everywhere I look. I hope you're doing ok ❤️ I weirdly have always been able to collect 8-12 eggs at retrieval, which we were so happy with until we found out they were destroyed and we have never made it to transfer stage despite multiple efforts. In hindsight I wish I'd frozen my eggs in my early 20s too but we were not to know. Sending lots of love to you 💞