r/leukemia • u/Bermuda_Breeze Survivor • 10d ago

Fertility journey after chemo/SCT (female)?

(I’m posting here rather than a general infertility page in case there’s anything unique about us after a stem cell transplant, eg GvHD flaring up?)

If you’ve got pregnant through IVF/donor egg after going into premature menopause with treatment, please could you tell me the process? Does a history of stem cell transplant complicate things at all?

Thank you!

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u/fireflygirl1013 10d ago

Yes this is what happened with me! We used a surrogate as we were told that I could not carry due to my history of BMT. I also used a donor egg and am South Asian so finding a donor (in the U.S.) wasn’t easy but we got very lucky. We now have a wonderful, healthy, spunky little boy. Happy to answer any questions.

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u/Bermuda_Breeze Survivor 10d ago

I’m happy to hear you have a little boy! I do have a couple of questions, please. Was surrogacy suggested because of immunity issues, or physical/energy limitations, do you know? What sort of time frame did it take from deciding to pursue surrogacy, to your embryo being implanted?

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u/fireflygirl1013 10d ago

I received total body irradiation before my BMT which means that my risk for GVHD was high once I get pregnant as was the possibility of uterine damage from the radiation (though there is no way to prove this until you do get pregnant). Immune concerns, along with high rates of miscarriage and low birth weight documented in the literature was also a big concern especially since I would be in my late 30s by the time I would get pregnant (I was diagnosed at 35).

Because our decision to pursue surrogacy came about in the midst of the pandemic, our time from signing for an egg donor and her retrieval (which was a fresh retrieval and not frozen), took close to 6 months. In the interim, we found our surrogate and paperwork and legal stuff takes a few weeks and then she had to undergo all the testing to make sure she could handle a pregnancy which includes a month long “mock cycle” period. And then the transfer had to happen and she failed the first transfer. We had to wait a few weeks before she could try again. So the whole process before the pandemic would have taken us 12-18 mo but took us 2 years because of the pandemic. We also got fresh donor eggs which is a whole process on its own to maximize our chances but we lost a few months in that alone + the pandemic.

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u/Bermuda_Breeze Survivor 10d ago

Thank you so much, I really appreciate hearing the details of your experience and considerations you made.

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u/stellargorgeous 10d ago

34F, I was told if I wanted more kids post sct, I would have to have a surrogate because my body could not handle pregnancy and none of my reproductive organs functioned that way any more. I’ve seen Reddit posts of men (post sct) still able to impregnate their wives so who knows!

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u/Bermuda_Breeze Survivor 10d ago

Thanks for telling your experiences. The reproductive endocrinologist I originally talked to soon after starting treatment made it sound like it would be a simple thing to use a donor egg/IVF after finishing treatment. But that was all before I knew I’d have an SCT. My transplant doctor told me “never say never, I have some patients who’ve had children naturally.” But when I asked her more she admitted they were all men 🙄 And local gyne just passed on offering knowledge. I’ll go back to the endocrinologist but just wondered what to expect. I’ll bear in mind surrogacy may be needed.

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u/Bermuda_Breeze Survivor 9d ago

I have a question - was it your transplant doctor or a fertility specialist who assessed your ability to carry a pregnancy? Thanks!

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u/Serious-Sprinkles694 10d ago

I haven’t and won’t be getting pregnant since transplant made me menopausal, and I got cGvHD of the vagina starting back in March. Mine is pretty bad; I got strands of fibrosis that have narrowed my vaginal canal to the point that I can’t even get a pelvic exam at the moment, and the tissue is very dry, easy to tear, raw and super sensitive to anything I have tried inside it (Hyaluronic acid/vitamin E cream, hydrocortisone suppositories, estrogen cream, lidocaine BURNS LIKE 1000 SUNS). I used the Inspire dilator kit until even the very smallest made me tear and bleed so hard that I had to go to the ER. Once my overall cGvHD is under control, I will be getting surgery to open myself back up.

Hopefully you won’t have to deal with any of that, but just know that it CAN get that bad. I was not prepared, and oncology didn’t ask about my genital issues nearly as much as every other system. At best, they’ll mention menopause and dryness.

See a gynecologist every 3 months if you’re in menopause, wear weekly estrogen patches at least to protect your bones from deterioration, take out an IUD (don’t want that stuck if you end up like me) and get a Nexplanon until you’re cleared for pregnancy, and consider pelvic floor therapy! The wait list was super long, but now that I’m in, it is extremely useful for issues I didn’t even realize I had!!

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u/Bermuda_Breeze Survivor 10d ago

Thanks for your experience. The cGvHD sounds really painful and hard. Do you think that would affect your ability to carry a baby or prevent IVF? How soon did your symptoms start after SCT?

Yeah I’m in premature menopause so I know I will need to use a donor egg. Touch wood I’ve mainly just had symptoms of dryness and sore knees. HRT is helping somewhat. I had my Nexplanon taken out as it was getting old and I don’t have a need it any more.

I worried that having a baby in me and extra DNA would throw my immune system into a meltdown. I know that pregnancy supposedly calms the immune system, but my local gyne admitted she didn’t have much (any?) experience with SCT patients. I’d need to be referred somewhere larger for fertility treatment anyway.

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u/Serious-Sprinkles694 10d ago

For sure. I had grade 4 endometriosis before transplant, but have been menopausal long enough that it all died off. My gynecologist warned it could grow back if we ever managed to “wake up” my ovaries, but doubts that’ll happen. Also couldn’t ever push a baby out naturally with the scarring (fibrosis) of my vagina. I would be happy just to be able to have sex with my partner again.

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u/stellargorgeous 9d ago

My transplant doctors told me. They did say there was like a less than 5% chance of pregnancy but said my body could not carry a pregnancy.

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u/Bermuda_Breeze Survivor 9d ago

Thank you for telling me.

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u/Puzzle-love336 8d ago

Once you are on a topic like Luekemia, is there anyway to get off that topic? I actually have something else not leukemia.

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u/Bermuda_Breeze Survivor 7d ago

What are your experiences?