While sitting in the hospital waiting room the other day waiting for my name to be called- it was my post excision surgery checkup, I could feel my heart starting to beat really hard and fast, my palms became sweaty, and my eyes starting to well up with tears. In my hand was a list of questions I hoped to ask in my appointment, most of which concerned fertility. It’s well established that endometriosis is linked to a lower rate of fertility, with increasing severity of the disease further decreasing likelihood of conception. I’m a stage four gal- never wanting to do things by halves, and this has been worrying me since my diagnosis in August 2014. Between you and me, Mr B and I are just starting to try for a baby, so the fertility issue has been on my mind a lot lately.
Sitting in that over lit waiting room I had a sudden epiphany- my fertility is Schrodinger’s cat! For those not as nerdy as myself, ‘Schrodinger’s cat’ is a thought experiment from Physics, which postulates that it is ‘observation’ (i.e ‘looking’) that makes things real . This short video explains the basic premise very well:
In this scenario the cat is my fertility and the poisonous gas is the toxic combination of my endometriosis and adenomyosis. Good right? My brain fog had clearly recovered enough to formulate a high level metaphor- progress right there!
As I’ve never tried to have a baby before, my fertility is simultaneously dead AND alive- and we won’t find out which until we try. There are no definite answers to be given right now.
The uncertainty of this situation scares me. It follows me around daily like a big black cloud hanging over my head that nobody else can see. I want to beg my doctor for concrete answers about my situation. Perhaps a definite ”you can’t” would be easier to handle than constant ”maybe you cans”? Although to have hope means something. You never imagine that you will have to question your fertility, it’s just there until you need it right?! I’m in my 20s, this can’t be happening! The pain of this certainty being taken away is just indescribable.
Worrying about your fertility can be a very lonely experience, especially when you have loads of friends who are all pregnant or new mothers. I’m so happy for them, I’m just sad for me. Maybe unnecessarily sad, but still sad. But I was never the girl who daydreamed about having kids; dressing up dolls and picking out potential baby names. It was meeting Mr B that changed all that. Crafting out our future together I can totally see children in it. I want that. I’m ready! I think I’d be a good mother. He would be the most AMAZING father.
In my appointment, which ended up being with an specialist endometriosis nurse (which was excellent by the way- she gave me an hour of her time and answered all of my questions with a high degree of knowledge and empathy), I tried my best to explain all my fears:
1) How I constantly swing between positive thoughts (‘‘Your Fallopian tubes are clear” and ‘‘You’ve had excision surgery now, that will help”) to negative ones (”Your right ovary is a wreck”, ”You have to much inflammation” and ”You have adenomyosis”) a thousand times a day in some weird fertility related bi-polar.
2) How I’m so scared to come off hormones as being on them has kept me going for most of my life, and because I’m scared that my endometriosis and adenomyosis will go wild without them.
3) And how I’m so scared to face an infertility journey, if that what comes, and am not ready for it. I have become familiar with what it does to people and I feel so guilty for the possibility of my husband never being a father or my mum and dad grandparents.
We can call this ‘Plan B’.
”You’re a worrier aren’t you?!” my specialist nurse commented. That’s true, but I’d call myself a realist. How can I not be, when I’ve done my reading and met so many people affected by this problem? It’s another example, so familiar to us those living with chronic illnesses, that people ‘don’t get it until they get it.’ They never will.
Right now I can’t answer all of these fears. Nobody can. All I can do is try and see what happens. It’s time to open the box and reveal the kitty’s fate. But I’m so scared to look inside, I don’t know if I can handle what’s in there.
I’d love to hear your thoughts and experiences of fertility with endometriosis and/or adenomyosis. Did you fear the worst but get lucky? Or do you stay positive that things will work out? Are you aware of actions to take which may help?
Love,
Claire
The Endo The World? 
I guess I’m sort of in the same boat; no one can ever explicitly tell you: yes you can or no you can’t. I didn’t think I wanted to until I was given even the slimmest possibility that I couldn’t. It’s weird, but I’m sort of glad that the decision may be made for me, either way. Does that seem cold of me?
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Hi.
Thanks for your comment, always good to be reminded I’m not alone in these challenges. I don’t think your approach is cold at all, just sensible/ pragmatic I guess. I think it’s that sense of having less choice in the outcome that stresses me out, but I am going to work on accepting this. Take care of yourself and keep me posted on your experiences.
Love,
Claire
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Oh my goodness, I am SO glad I came across you’re blog. I’ve just started a blog too – about exactly the same thing. I had a clear dye test two years ago but no tests since, and also have a pretty messed up abdomen… So, I really do empathise with you entirely! The waiting, the worrying…
Reading the forums, websites etc. doesn’t really help either as the stats seem so against us. And I don’t know how I would cope if it turned out I am infertile, and if I had to deny hubby the chance to be a dad, or our parents the right to be grandparents….
And everyone says “oh don’t worry, it will happen” – how can we not worry?! All the information makes us feel so… pessimistic.
Knowing that other ladies are going through the same thing helps so much. I’ll follow your blog with crossed fingers for you and your family – I really hope it happens for you xxx
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Hi,
Thanks so much for your comment. I’m glad you like my blog and that it has helped in a small way. It’s nice to know that I am not alone with these feeling and experiences (although my biggest wish is that none of us had to go through them). It’s so very difficult, and even harder when we have to go through it without those around us being aware and/or empathetic, really feel for you.
Please do take care and keep in touch. Keeping my fingers crossed for you too.
Best wishes,
Claire
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Claire, I’m so pleased to find this blog. I’m a fellow endo sufferer, but 15 years older than you. Like so many of us, I had had pain for many years but was not diagnosed until I saw a reproductive endocrinologist when I was experiencing infertility at age 33 or so. I had a lap and the endo was excised. We were advised at the time to try naturally for a few months but then to go straight to IVF if that didn’t work, which is what we ended up doing. I now have two kids. I had many good years of no pain, despite a bunch of endometriomas visible on ultrasound, but it has crept back in the past couple of years, and a recent ultrasound also suggested adenomyosis, which I had somehow never heard of. So I am heading to an endometriosis specialist in my area (California) next week – it’ll be interesting to see what he recommends.
I appreciate you sharing your experience and also summarizing the current state of endo research and awareness! It does seem as if some progress is being made. I also hope you have a smooth journey to conception!
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Hi Sarah,
Thanks for your lovely comment and well wishes. I am so please you like my blog and find it useful. I’m so pleased you were able to have children in the end, I find such stories very reassuring. How did it go with the endometriosis specialist- I hope it was useful and you are making good progress?
Do take care and keep in touch.
Best wishes,
Claire
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Hi Claire, Thanks for your blog. It is so refreshing to see so many of the same feelings that I have had reflected here. It is often hard to speak to people about it. Best of luck in your efforts this year, I hope you have some success! p.s. I think you have the right idea with the endo-diet I didn’t get past reading dairy, wheat and gluten free before giving up. Stressing over what you can and can’t causes just as much trouble!
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Hi,
Thank you for your lovely message- I am really pleased that you like my blog and can relate to some of the emotions/experiences I have expressed. It is definitely hard to talk to the non-sick people in your everyday life about these things, I’m often sad about the lack of opportunities to do this, which is why I think I find blogging so cathartic. I’m also always pleased and relieved when I hear other people are taking a more relaxed and pragmatic approach to the endo-diet too!
Take care and please do keep in touch.
Best wishes,
Claire
x
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I, too, am a worrier. Majorly so. I had already had one child when I was diagnosed with endo but I still wanted more. That maternal instinct is so strong and doesn’t go away just because you already have a child. And the pain of infertility is still so harsh, even when it’s secondary infertility.
When I finally found a doctor who believed I may have endo, I was told to try to conceive for a year and if I didn’t get pregnant, he would operate and look for the disease. I tried for a year with no luck, but a few close calls that left me heartbroken.
When the doctor finally went in, he found a ton of endo and adhesions. My left tube was completely twisted and blocked beyond repair. My ovaries were adhered to my abdominal walls. The doctor was able to free up the ovaries and clean out the endo and adhesions but my left fallopian tube was no longer functional. (Cool fact: The other tube will make up for the non-working one and reach over to grab the egg on the other side. Pretty cool, right?!)
I was put on Lupron, much to my dismay, which prolonged my wait. I didn’t start my cycle again after finishing the Lupron so I had to take progesterone to kick start them.
Finally, four months after that, I conceived. I went on to conceive a third child unexpectedly and unplanned, thinking it would be difficult to conceive again (Wrong! One slip-up by my then husband and baby number three was on the way! A surprise that I very much welcomed!)
I don’t know if you’re a Christian, but for me, prayer was everything. Giving my worry to God and knowing that with Him, all things are possible, really helped me. Each of my babies are a miracle from above. I pray your miracles will be sent to you soon too!
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Hi,
Thanks so much for your message, This has really encouraged me. Love hearing about fellow endo-sisters who have defeated infertility. That fact about Fallopian tubes is super cool- didn’t know that! Do you feel that your endo symptoms have changed post-babies?
Take care of yourself, and please do keep in touch.
Claire
x
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I did have significant relief after each pregnancy. But now, I’ve been disabled by the disease (have been for about 3 years…my youngest is 15 now). I have a pretty aggressive, rare case of Stage IV endo. I’ve had two ablation surgeries and since 2013, I’ve had three excisions. The first two were botched and not done carefully so I’m hoping the third, which I had around 4 weeks ago, will finally being me relief once I heal. My surgeon referred to me as a “medical train wreck” (very accurate description), so please don’t worry it will happen to you. A large majority find relief after excision. Praying that you are able to conceive as often as you want to! 💗🙏🏻
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