Egg Freezing - have you done it?

[PracticingAcceptance]

I'm thinking about freezing my eggs (I'm in my early 30s). My concern is how injecting myself with hormones in preparation might affect me. I'm also slightly concerned about the twilight anaesthetic and the physical egg scraping procedure. I would expect to have a setback based on just the energy it would take to make it all happen, plus a few weeks after the procedure.

1. Has anyone done this? If so, how did it affect you?

2. Otherwise - do you have any idea of how the hormones could possibly affect my symptoms?

3. I'm wary that a normal doctor at a fertility clinic would not know the first thing about ME/CFS. I am starting to think I might have to find someone that specifically knows about hormones and ME/CFS before I look into egg freezing. Does anyone know a hormone specialist to recommend in the London, UK area?

More context: I have borderline PCOS, and severe ME/CFS.
PCOS: I have cysts on my ovaries and a borderline imbalance of hormones.
Went on the pill to attempt to deal with hormone imbalance. Hair started shedding. Switched to mini pill. Periods stopped, but hair continued shedding. No effect on ME/CFS symptoms.
Went on thyroxine. Stopped hair shedding. Possibly caused insomnia. No effect on ME/CFS symptoms.
Came off both. Hair shedding more again. Insomnia continues. No effect on ME/CFS symptoms.
The hair shedding makes me think that there is more treatment I could try but I don't think Dr Bansal is keen to try any more hormone treatment with me. I would need to find a hormone specialist.

I am afraid that big doses of hormones might affect me in unexpected ways. I have suspected that hormones may be a missing piece in my case but I may be wrong. I've always had very heavy painful periods that have been a big feature in my life. Lots of low mood and anxiety too.

I am improving atm on B12 injections and supplements - enough to start considering making this happen.

 

[gbells]

Perhaps you could do it then fertilize several eggs and test them for ME viruses you are positive for then allow the uninfected ones to come to term in a healthy surrogate female or yourself if we develop a cure in the future that is available and allows you to recover.

 

[Rufous McKinney]

I am afraid that big doses of hormones might affect me in unexpected ways.

I know a couple of women who did these things and the hormone shots and issues were very very intense for both those females.

It does seem like it could be really difficult, with intense ME, to also experience that level of hormone disruption.

Regarding peri-menopause- I did find that Progesterone Creme was very helpful to me...I used it at a lower dose..like once a day instead of twice. 20 days, off 10. It reduces some of the symptoms like: heavy periods. Mine were getting more and more so, as i understand this is rather common as progesterone drops.

(the progesterone is made in test tubes in labs from the precurser, and is bioidentical.)

 

[PracticingAcceptance]

It does seem like it could be really difficult, with intense ME, to also experience that level of hormone disruption.

That's what I'm concerned about.
I'm thinking of going on anti-depressants since I'm also starting therapy this week. If I can get my mental health to be optimal, that will help. I'll have therapy support in place.
I'm also curious about whether I might find out something useful for ME/CFS symptoms.

I don't think I'm anywhere near peri-menopause, fingers crossed! I'm glad you have something that works for you.

@gbells that sounds creative, but is there the technology to test fertilised eggs for ME viruses? I've thought about it and I believe that by the time I have a child and if they do end up getting ME/CFS, I feel quite hopeful that there would be proper treatment by the time they might get sick. Ideally I'd like to get better and hope that from getting better I would be more likely to have a baby that has survivor genes! And have a baby naturally. But I'm doing egg freezing in case it takes me more than 3-5 years to recover. I'm still hopeful that I will recover sooner than that.

 

[Rufous McKinney]

I don't think I'm anywhere near peri-menopause,

Peri can start- long before many women realize. If your periods are getting heavier- that might be something to key on.

Dr. Lee....I had his book....

https://www.johnleemd.com/progesterone-cream.html

 

[Rufous McKinney]

I would be more likely to have a baby that has survivor genes

I've had this- ME...for most of my life, pregnancy was challenging....but I have my daughter and of course would do all that, all over again.

My daughter does not have ME. She has had far far fewer problems then I ever faced. She had some mild asthma...its not debilitating. She's never had this type of crap happen. A couple of anaphylactic episodes from risky sea food.

And now my grandaughter has a simply stunningly marvelous immune system... I atrribute to hybrid vigor, better crossing of the gene pool!

 

[Rufous McKinney]

Ideally I'd like to get better and hope that from getting better I would be more likely to have a baby that has survivor genes!

Here is some research thing about how the placenta has mechanisms to prevent viruses from reaching the developing baby. So thats - good.

https://www.sciencedaily.com/releases/2013/07/130701151606.htm

 

[gbells]

@gbells that sounds creative, but is there the technology to test fertilised eggs for ME viruses? I've thought about it and I believe that by the time I have a child and if they do end up getting ME/CFS, I feel quite hopeful that there would be proper treatment by the time they might get sick.

Sure, they just let the embryo multiply to a few thousand cells and run a PCR DNA test. That scans the DNA and the viruses pop right up. Here's some info.

https://www.pennmedicine.org/for-pa...re/embryo-screening/treatments-and-procedures

You might want to use licorice extract tea the day before and of the procedure (4 cups per day of 1 tsp boiled and cooled) to keep the blood viral count as low as possible. Check with the doctor to ensure it won't affect the extraction. But it looks safe.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7569710/

I am optimistic we'll have some cures available in the future.

 

[PracticingAcceptance]

Peri can start- long before many women realize. If your periods are getting heavier- that might be something to key on.

They're not getting heavier. For the first time in my life, they're well managed with tranexamic acid and mefanamic acid. They're regular too, thankfully. But yes, I'm aware that it can happen - my friend is 35 and is in peri-menopause.

I'm really glad your daughter and granddaughter are ok. ME does seem to pass down through the mother line sometimes. I know someone who this has happened to.

I don't think it's about protecting the baby from viruses... I can't link a source, but I read a couple of things that said that as time goes by, based on our life experiences, the genes we pass to our babies change. So if I got better, that could theoretically affect what genes I pass on. I think it was mentioned in The Body Keeps The Score.

I atrribute to hybrid vigor, better crossing of the gene pool!

I'm mixed ethnicity - parents from different continents. My brother had cancer and I have ME/CFS and had bad asthma as a child. I heard that mixed people might have immunities that others don't but apparently not in all cases!

Sure, they just let the embryo multiply to a few thousand cells and run a PCR DNA test. That scans the DNA and the viruses pop right up. Here's some info.

Ok, so I don't have a partner but that's something I'd do at the stage of fertilisation in the future, if I could afford it and if we knew exactly what DNA affects ME/CFS.

 

[gbells]

They're not getting heavier. For the first time in my life, they're well managed with tranexamic acid and mefanamic acid. They're regular too, thankfully. But yes, I'm aware that it can happen - my friend is 35 and is in peri-menopause.

I'm really glad your daughter and granddaughter are ok. ME does seem to pass down through the mother line sometimes. I know someone who this has happened to.

I don't think it's about protecting the baby from viruses... I can't link a source, but I read a couple of things that said that as time goes by, based on our life experiences, the genes we pass to our babies change. So if I got better, that could theoretically affect what genes I pass on. I think it was mentioned in The Body Keeps The Score.


I'm mixed ethnicity - parents from different continents. My brother had cancer and I have ME/CFS and had bad asthma as a child. I heard that mixed people might have immunities that others don't but apparently not in all cases!


Ok, so I don't have a partner but that's something I'd do at the stage of fertilisation in the future, if I could afford it and if we knew exactly what DNA affects ME/CFS.

You'd be better off getting the eggs extracted and doing the fertilizations in vitro. Then you would have several fetuses to go through and can pick one that isn't infected.

 

[PracticingAcceptance]

You'd be better off getting the eggs extracted and doing the fertilizations in vitro. Then you would have several fetuses to go through and can pick one that isn't infected.

I'm confused about your response - that is what I meant. Though I thought it was about checking genetics rather than infections.

This is getting a bit off topic now. I know how egg fertlisation works. What I'm concerned about is how the process of doing it might affect me with ME/CFS.

 

[gbells]

I'm confused about your response - that is what I meant. Though I thought it was about checking genetics rather than infections.

This is getting a bit off topic now. I know how egg fertlisation works. What I'm concerned about is how the process of doing it might affect me with ME/CFS.

That's a very specialized question. Try asking a few IVF doctors who may have seen some cases. I doubt there's any research on it. I would email them directly but you can also post a question on quora.com and request from IVF doctors.

I'll put some requests out and see if I get any bites.

 

[PracticingAcceptance]

@gbells that's v sweet of you. Quora is an interesting idea... I find the responses are such a mixed bag, I'm afraid to post.

I was thinking about calling up the ME Association tomorrow and finding out if they knew any hormone specialists... and that maybe even if I didn't pay to see one, someone would know someone who is a fertility doctor that is aware of ME/CFS, and maybe has done egg freezing with a couple of ME/CFS patients before. Sometimes the internet isn't the best way to find someone, sometimes it's about asking the right people.

 

[gbells]

None of the reproductive endocrinologists answered back on Quora.com so I did some searching. It turns out that estrogen is protective against herpes virus infection. Infected eggs should not cause a pregnancy.

The goal of this work was to study the capacity of the herpes simplex virus (HSV) of infecting ovary with disease in case of the intravaginal experimental animals. The results of the study demonstrated that the ascending HSV infection in mice lead to modification of all the cells of the ovary, including follicular cells synthesizing estrogen and progesterone. The two hormones influence the development of the disease. Estrogens provide the protective effects against the virus. Progesterone does not modify the body sensitivity to HSV, but reduces the effectiveness of the antiviral immunity, resulting in increased mortality of animals. We demonstrated that infection of oocytes in ovarian follicles of female mice during infection with HSV modified the process in vitro and for the first time demonstrated the detection of viral antigens in mature oocytes in patient with infertility. During the intracytoplasmic sperm injection into the infected oocytes (ICSI), the failure of fertilization was observed. These results are of interest, because there is no available literature on whether HSV infection of oocytes can have a direct negative impact on the process of fertilization in humans.

Abdulmedzhidova AG, Rog KV, Zavalishina LÉ, Kushch AA. [Intrafollicular infection of mammals and human oocytes by the herpes simplex virus]. Vopr Virusol. 2014 Jan-Feb;59(1):42-6. Russian. PMID: 25065146.

 

[PracticingAcceptance]

@gbells thanks - I am a bit confused about this information.
I'm genuinely not concerned about my offspring having ME/CFS at this stage - it sounds like this is the part that you are interested in, though?
What I'm concerned about is how I will react to the hormones during the process of egg freezing, and if there would be any long term effects on me.

https://www.nice.org.uk/guidance/cg156/ifp/chapter/what-happens-in-ivf
This link says that the hormones given are:
oral contraceptive pill or progestogen tablets
gonadotrophin-releasing hormone agonists
human chorionic gonadotrophin (hCG)

No mention of oestrogen.

Your quote does mention: "Progesterone does not modify the body sensitivity to HSV, but reduces the effectiveness of the antiviral immunity, resulting in increased mortality of animals." But I have taken the progesterone pill before and I was fine. But I've heard about other people with ME/CFS reacting badly to progesterone.

 

[gbells]

I'm genuinely not concerned about my offspring having ME/CFS at this stage - it sounds like this is the part that you are interested in, though?
What I'm concerned about is how I will react to the hormones during the process of egg freezing, and if there would be any long term effects on me.

Yes that was my concern. You'll have to ask some IVF doctors about the hormones. Maybe you can try them at low doses and see if you can tolerate them if there is a question.

 

[gbells]

We got a hit on Quora about pregnancy. A virologist says EBV won't be in the egg but he said HHV6 can infect eggs.

If a patient has chronic viral infections (EBV, HHV6) would their eggs also be infected and would there be any difficulties with the oocyte extraction?

Hi Alex,

As to chronic EBV infection, the eggs/oocytes usually are not infected. They can be extracted and cryopreserved before hematopoietic stem-cell transplantation:

https://pubmed.ncbi.nlm.nih.gov/29877232/

HHV-6 actually has been demonstrated in oocytes, and it is known to markedly increase the risk of spontaneous abortion, preterm birth, and stillbirth. From the top of my head, I would not recommend extracting and preserving oocytes because of the aforementioned risks in later pregnancy mentioned above. Still, to be on the safe side I would suggest seeing a specialist.

My take on this is that If the embryo isn't infected but is then implanted in a HHV-6 infected mom it could contract the virus in utero and spontaneously abort. In that case it would be safer to test several embryos first for HHV-6, save some uninfected ones for freezing and then go with an uninfected surrogate mom for implantation to have the best chance of a successful pregnancy. Good topic to discuss with a specialist.

Yes, I completely agree, including to discuss this topic with a specialist. Good luck!

 

[athldn]

I'm thinking about freezing my eggs (I'm in my early 30s). My concern is how injecting myself with hormones in preparation might affect me. I'm also slightly concerned about the twilight anaesthetic and the physical egg scraping procedure. I would expect to have a setback based on just the energy it would take to make it all happen, plus a few weeks after the procedure.

1. Has anyone done this? If so, how did it affect you?

2. Otherwise - do you have any idea of how the hormones could possibly affect my symptoms?

3. I'm wary that a normal doctor at a fertility clinic would not know the first thing about ME/CFS. I am starting to think I might have to find someone that specifically knows about hormones and ME/CFS before I look into egg freezing. Does anyone know a hormone specialist to recommend in the London, UK area?

More context: I have borderline PCOS, and severe ME/CFS.
PCOS: I have cysts on my ovaries and a borderline imbalance of hormones.
Went on the pill to attempt to deal with hormone imbalance. Hair started shedding. Switched to mini pill. Periods stopped, but hair continued shedding. No effect on ME/CFS symptoms.
Went on thyroxine. Stopped hair shedding. Possibly caused insomnia. No effect on ME/CFS symptoms.
Came off both. Hair shedding more again. Insomnia continues. No effect on ME/CFS symptoms.
The hair shedding makes me think that there is more treatment I could try but I don't think Dr Bansal is keen to try any more hormone treatment with me. I would need to find a hormone specialist.

I am afraid that big doses of hormones might affect me in unexpected ways. I have suspected that hormones may be a missing piece in my case but I may be wrong. I've always had very heavy painful periods that have been a big feature in my life. Lots of low mood and anxiety too.

I am improving atm on B12 injections and supplements - enough to start considering making this happen.

I realise this was posted some months ago but am wondering whether you have had any luck in finding a specialist? I came across your post because like you I’m considering freezing my eggs. I am 29 and have moderate to severe ME but also carry a gene for a rare genetic condition unrelated to my ME which doesn’t affect me really but could affect my offspring. So IVF would be the way for me to have children in the future anyway and like you I’m concerned about the effects of the hormone treatment on my ME symptoms. I recently went on the minipill to try and treat the worsening of my fatigue levels towards my period but I had horrible side effects including terrible nausea, very low mood etc. So I came back off it.
Also near London so keen to hear if you got anywhere.