Crohn's and Premature Ovarian Failure/donor eggs

[elvie]

Hi all,

I'm new to Crohn's (diagnosed December 2012) but not to female "issues" and I'm hoping for some comments/advice.

In 2002 I was diagnosed with Premature Ovarian Failure, a condition where as it sounds, the ovaries just don't do their normal job of producing eggs. Is there anyone else out there with this condition - and anyone with this who has still become pregnant whether through donor eggs/IVF/naturally?

I have had all sorts of hormone drugs to try to stimulate my ovaries to produce something, but two rounds of double the recommended dose of hormone injections produced absolutely nothing, and at that point we gave up because there was clearly no point going for round #3 when nothing was there.

It seems from what many of you are saying here as well as the informative doctor's article on Crohn's and female hormones that there is a possible link between female hormone problems and Crohn's. That at least could explain why I've got the triple whammy of the ovarian failure/Crohn's/arthritis.

What I'm particularly curious about is the donor egg issue. I'm going to raise with my endocrinologist whether donor egg implantation would still work while I'm on Humira/Imuran which I am starting shortly. Certainly my gastro thought there would be no problem having those drugs and having eggs implanted. Egg implantation is not something I'm thinking of straightaway or maybe even at all (at 31, I'm as confused as ever about whether I want children or not). Is anyone aware of any issues with having donor eggs and those drugs?

This has been brought into sharp focus for me very recently as my sister is due to give birth any day. Needless to say I feel very conflicted about this as I feel great joy for her and my brother-in -law and already have a tremendous feeling of love for the baby to come. On the other hand I feel great sadness and bitterness because of the extreme unlikelihood (except for the donor eggs) that I will ever have a child. It's complicated!!!

I'm also single and don't want to deliberately raise a child on my own so it may never be something I decide to experience anyway. I just feel very upset that the choice has been taken away from me, by and large.

I am so happy I have found this site and a place to discuss these issues without being judged or having people even inadvertently saying the wrong thing (once my niece/nephew arrives, I'm expecting lots of "It will be your turn next!" comments which I am very skilled at deflecting with a smile and a "Who knows?").

 

[UnXmas]

I don't have much advice, but I have premature ovarian failure - or rather, it's called that but my ovaries didn't develop properly in the first place (I did not go through the normal changes in adolescence and now in my twenties I have to take various hormones). This is due to an endocrine condition which is proving impossible to diagnose. It's not linked to Crohn's in my case.

I have had to accept I can't have children, my health (not Crohn's - I really have a whole host of issues, the main one very dibilitating) and my overall situation is just too messed up to even consider it, I'd never be approved for fertility treatments due to my physical state and I'd never be approved for adoption for the same reason. (I'm not sure what it's like where you are, but here in the UK just the process of both IVF (which I've been told wouldn't work for me anyway) or being approved for adoption are overwhelming, and besides that I know that even if it were a possiblity I'm just not able to give the life a child deserves.

I am so unhappy about this as I always wanted to have children. I had a lot of trouble accepting it, but I've had to. I have a baby nephew now, which helps, but I completely understand the contradictory feelings. I cried when I found out my sister was pregant, through sheer jealousy I guess. Now I've learned to be happy for her, though I still feel bittersweet about it at times.

I've never looked into fertility treatments or anything like that in any real detail since I know it's not something I could ever achieve. I hope someone else can be of more use to you on this issue. But I do understand what it's like, especially being around other people who have kids.

It sounds like you are in a position where there is a reasonable chance you will be able to have a child. I can only imagine how stressful going through the various treatments must be, especially when dealing with Crohn's and things as well. You must be incredibly strong to do what you're doing, and I hope you get the outcome you wish.

 

[elvie]

Thanks for your comments, UnXmas. It is nice (in one sense) to meet someone with the same condition although I'm sorry to hear it was worse for you.

As for being strong about all this, I'm trying! It's such a relief to have this space to vent away with people who understand.

 

[elvie]

I thought I'd add a comment about adoption and donor egg processes in Australia for anyone who might be interested (and anyone who can add more details).

I don't know a lot about adoption processes but basically here in Australia the situation is much the same as what it sounds like it is the UK according to UnXmas' comments above. It's very, very difficult, takes a long time - 5-10 years, and women can't be on IVF treatment according to the adoption rules of many foreign (by which I mean, non-Australian) countries, while they are going through adoption processes. This has led to a lot of sadness and in some cases people haven't been able to adopt and because they couldn't go on IVF while going through the adoption roundabout, they missed out completely on having children.

The process for donor eggs is quite different to that in the US. In Australia it's known as 'altruistic egg donation' - i.e. women aren't (officially) paid a cent for going through a lot of pain and suffering to remove eggs from their ovaries so that they can be implanted in another woman. It seems ridiculous when men get paid for sperm donation...

There are also strict requirements for egg donors: they must be under 35 (to ensure quality of the eggs) and have completed their own families. Needless to say, there's not a lot of women who are ready, willing and able, in those conditions. Fortunately, there are some angels out there though. Personally I would be very happy to pay a woman who is prepared to go through all that just so that I could one day have a child. I hold out a small hope for myself -small, but it's there. While there's life there's hope.

 

[UnXmas]

It does sound similar to what I know of the UK system (and from what I've heard it's also difficult to use a surrogate to have a child). I think it's somewhat appropiate to make it difficult for prospective parents - especially with adoption where the kids are likely to come from difficult backgrounds. But I do find it ironic that when someone has children naturally, it seems like the authorities will do everything they can to keep the family together, even when doing so means the children's life is very difficult.

I guess there's the same double-standards regarding illness too - it's the main thing that would keep me from adopting, and obviously it's another illness that keeps me from being able to conceive naturally. But if I had been able to have a child naturally despite being ill, I'd probably be able to get help with childcare and it would be very unlikely the authorities would think of taking the child away.

However, I wouldn't think Crohn's would have the same problem, as it doesn't restrict what you can do too much and is compatible with being a parent.

Hopefully someone who knows more and can answer your questions will post soon - maybe you could start the same thread on the Parents with Kids forum of this site or on the Support forum, since those seem to be far more active than this one?

Btw I realise I was very vague about my medical problems in my previous post -this is because in one case I don't have a diagnosis, and the other - my most dibilitating illness - is very rare, and I find I don't want to name it on the forum because anyone who knows me would be likely to work out who I am. Not that I'm paranoid that people I know are stalking me on this forum! But I do feel more comfortable talking about these personal topics anonymously.

 

[elvie]

I completely understand your desire for anonymity. This is the first time I've posted anywhere online about my premature ovarian failure as it's something I am usually quite private about.

Thanks for the tip about the parents' forum, that sounds like it's worth a try.

Surrogacy is also made very hard here - in most Australian states it's illegal. The double standards apply to IVF/adoption really annoy me - e.g. in one Australian state, people going through IVF must have police checks to make sure they're not on the registered sex offenders list. Of course they would never insist on fertile couples having police checks of that kind before having children - evidently people who want to go through the trauma and expense of IVF must be sex offenders...sorry for the rant, that really annoys me!

 

[UnXmas]

I’ve been thinking about this a little more (I’ve never really had a chance to discuss it with anyone else before) and thought I would also add that it’s actually been a relief to me to know that I’m definitely not going to have my own child. When I was in my late teens and just into my twenties, my health was not as poor as it is now. I didn’t realise then that my medical conditions were so relentlessly progressive. I did know already that I was infertile, but I thought there was a chance I’d be able to adopt. I put a huge amount of pressure on myself to try to make this happen. I thought I had to make myself healthy. I needed to find the perfect relationship because it would be easier for a married couple to get approved for adoption. I felt I had to make my life as perfect as possible.

When a few years later I realised my health was just too bad – and that the rest of my life didn’t look all that good either – it actually made things much easier. When I had a bad day of symptoms, now it just was what it was. It no longer caused me to think that I couldn’t let myself be this sick because I had to appear healthy and I'd stress about how I’d ever look after a kid when I couldn’t even take care of myself or get through a day of uni or work. I don’t have to stress over making my life look like I’ve got everything together anymore. I don’t have control over my health – or anything else really. Realising this also meant I stopped blaming myself and feeling like a failure for not being a suitable prospective parent.

I expect you’re much less neurotic about things than I am, but if you do fall into the way of thinking that I did, it’s worth remembering that we can only take so much responsibility for how our lives turn out, and that making a decision one way or the other – when the time is right for you to do so – can make things much easier, even if it’s not the outcome you originally desired.

And I wanted to add something a little optimistic as well. My sister has had severe Polycystic Ovary Syndrome since she was a teenager. She didn’t have regular periods, and her doctors had told her that conceiving a baby would be difficult and she’d need fertility treatments, if she was even fertile at all. Well, my sister reached her late twenties and got engaged. She explained all this to her fiancé. They were prepared for difficulties. Then my sister got pregnant on her wedding night (or very soon after), which was the first time she stopped using birth control which she'd been taking previously to control other PCOS symptoms. She now has a baby son (my nephew).
I realise PCOS is very different to ovarian failure, but I do believe that it just goes to show that when it seems with things like this are going to be difficult or impossible, what actually happens can end up being quite the opposite.

Sorry for the long post. Like I said, this isn't something I've had many people I can discuss it with.

 

[elvie]

Yes, you're right, there are good news stories out there about people who get the 'you will never have a child' spiel. I am by nature an optimist but with a realistic streak - so while I haven't given up hope completely, having done two rounds of hormone stimulation treatment that failed miserably since my ovaries are an egg-free zone, I'm not holding my breath for conceiving a child naturally. Still, odds of 25-40% success for donor egg pregnancies are good enough for me to have that in the back of my mind.

You sound like you've come to terms with your health issues which must be a tremendous relief. For years I thought I'd come to terms with not having children - I am very career-oriented - but now that I'm in my 30s I've suddenly started feeling that I *might* want a child, and that's brought back a lot of feelings of sadness. That combined with my sister's pregnancy has made life difficult - and then I got the Crohn's diagnosis! Life was meant to try us...

All the best to you. I've really appreciated hearing your comments. Knowing there are others struggling with fertility problems does make things easier, if you know what I mean.

 

[UnXmas]

It sounds like you have a very balanced attitude towards this (I really didn't! I may talk some sense now, but this was after years of denial of going about things in completely the wrong way.)

I think my biological clock started early, perhaps because I knew how difficult things would be it was on my mind even when I was at university - when all my peers were really not thinking about children at all.

Do come back and post anything about your sister's pregnancy here or pm me if you ever want to talk about it. I found my sister's pregnancy so hard to deal with, so I know the negative feelings associated with it, but when her baby came something changed for me again.

My sister and I had not been that close - she's a high-acheiver, very bossy - the complete opposite of me. But her son has some serious medical issues, and I saw a different side of my sister - she cried, she needed help, she was a totally different person. We've become closer as a result. And I'm so mesmerised by her baby which she greatly appreciates. She wants to show him off and likes having me as one of his fans.

It's the closest thing I'll get to being in a baby's life. It makes sense logically for me to make sure I see my nephew as a positive thing rather than just wishing for my own child, but actually there wasn't anything logical or conscious about why my feelings changed. It was a purely emotional change that I didn't even know to expect - I just started being happier about things rather than dwelling on my own situation. I still get down about it and feel sorry for myself at times, but I'm so much happier now than I was before.

You've already gone through a lot of different emotions with your sister's pregnancy, and I hope the birth brings you some more positive experiences, even if it's painful at times.