Endometriosis UK
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Waiting is making it worse!

I was just wondering how people are dealing with waiting to see specialists and getting answers. I’m currently waiting for my appointment with a specialist in July but sometimes I just start thinking the worst. I keep reading things about how endo can affect fertility and I don’t want kids right now but I do know I want them at some point. I’m just really starting to think about all the worst case possibilities and I just want to know the reality of it all already so I can deal with it.

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Hey, I’m still waiting for a lap but when my doctor told me about how endo can affect fertility I freaked out. I’m only 19 but I may want kids in the future. My boyfriend helped calm me down a bit and a lot of women on here have conceived naturally or with a little helped. Sometimes endo doesn’t affect fertility so don’t worry too much.

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Try not worry(easier said than done eh?) If it is Endo then all is not lost as my friend had 2 daughters after a Lap confirmed Endo. Treatments have come along way since my Endo diagnosis and if Endo is confirmed you have Endometriosis UK to turn too, they helped me.

Good Luck x

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Get yourself on the cancellation list. See if they have any cancellations every few days and you may get one (I did)try not to worry until you’ve got some answers.

I was told at 14 I wouldn’t be able to have kids as I had severe PCOS. I now have four :)

Xx

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The wait in our local area is 40 weeks - I was referred at Christmas - it’s incredibly frustrating especially when I consider my symptoms are constantly worsening. I’m hoping that when I finally get the appoint it will be worth it...

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40 weeks! That's shocking. Do you know if anyone has taken that to the MP/MSP for the area?

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I emailed my MP and got no response. Only 4 and a half months to go 😭

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Ugh, well there's something else for you to get angry with!

It's not good for anyone, the patients or the staff working in those services.

I hope you're not struggling to much. X

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I work for the NHS in the local area so it’s hard for me to get angry about it when I know how stretched our resources are. X

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So do I! I think that's why I feel sorry for the staff, I know all to well the pressure of a waiting list!

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Finally have a date for my first appointment-10th October!

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Waiting, I feel this may be my specialist subject! 😂

For the same set of symptoms I've waited 9 months for gastro, 6 months for gynae, 3 months for physio and 9 months for orthopaedics. And now orthopaedics have found the severe endo that was ruled out by gynae, guess what, I'll have to wait yet again to get referred back to gynae (or the specialist endo Centre). I've been told to expect at least 6 months.

I have moments of being really frustrated, scared and plain angry. But I try to to learn to understand what I can and cannot have control over. The things I can, well I'll focus on that. I'll likely write a letter of complaint to my NHS health board and to my local MSP so that I feel I've at least done something. But once all that's done, other than go private, which I've decided not to do, I need to go just find ways to cope. I meditate, talk to people, write about how I feel. I try to allow myself space to feel all the things I feel and not just 'take my mind off it' as I feel that usually just exhausts me. I try to to remind myself that it's not a personal thing about me. It's just that the NHS is underfunded. I try to be grateful for what I do have (access to free healthcare, sick pay, the better days, my cat, my husband, a creative brain that never gets bored, netflix). It's not easy.

And with the fertility side of things. You've got youth on your side and there's loads of options available even if the endo has affected your health. Worrying about what might or might not happen only impacts your enjoyment of the current moment, which is actually the only moment you have.

X

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