Upset and feeling very down-referral to fertility clinic

Hello,

I was diagnosed with endo in August after a lap which I had a cyst removed from one ovary and some endo removed but was stage 4 overall. The consultant said the ovaries and the tubes were intact but recommended a course of injections to down cycle.

I had my follow up last week back down in the midlands where I have moved to. The consultant I saw said I definitely need to down cycle using either injections or the combined pill. I'm going to go for the latter.

We are desperate to conceive so this was hard to swallow really, my cycles are regular, am definitely ovulating and pain is very much manageable and no where near as uncomfortable.

She also said that it was likely that I would be unable to conceive naturally and IVF would be my best shot. So need to be referred to a fertility clinic locally but the wait for treatment if eligible could be very long.

I feel utterly devastated for all sorts of reasons I think but just the shock has really got to me. My mood has plummeted, I'm very tearful and every pregnant person or child I see just hurts. It just seems so 'easy' for others to get pregnant.

I always knew there was something wrong with me and that it could make having children harder. I thought that because my ovaries and tubes were fine then I should be ok to conceive naturally.

There's no way I can afford private treatment so am at the mercy of NHS waiting lists.

I'm lucky that there is IVF as an option and will know more when I attend for the appointment but at the moment I'm just reeling and feeling very fragile.

9 Replies

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  • Hi,

    have you been trying to conceive naturally already? Just wondering why if your tubes and ovaries are fine why they would say you might not be able to conceive naturally?

  • Yes we have been trying naturally. I Can't remember what else she said the consultant, but specifically did ask about tubes and ovaries. I think much of the endo is in PoD.

    I need to ask more questions when I get referred in. Just a bit disheartening!

  • Yes we have been trying naturally. I Can't remember what else she said the consultant, but specifically did ask about tubes and ovaries. I think much of the endo is in PoD.

    I need to ask more questions when I get referred in. Just a bit disheartening!

  • Its frustrating having to wait for an apt to find more out. I always find I have no questions when im first told things and think of hundreds when I get home and have had time for the info theyve told me to sink in. Hope your fertility clinic apt goes well.

  • Hmm, I had a cyst removed and my tubes were clear too. They recommend either putting you on something to suppress the endo (the pill etc) or tell you to try start trying to get pregnant immediately (same effect). I don't understand why you shouldn't be able to try now, after a lap is the best time, but maybe there is some reason. IVF is a fantastic technology that is available to us if we do end up needing it though. Have you had your partners sperm tested? That ended up being what several women with endo's problems were in the end after they went through everything.

  • Hey girl, hang in there. You'll find that your chances are much better than other IVF candidates. IVF has really good statistics nowadays so it is just a matter of time until your dream of having a baby comes true. My only advice if you don't mind is to start trying, sooner rather than later. Good luck

  • I have a long history of severe endo, numerous laps for excision plus 7 years of infertility. Like you I had normal tubes and ovaries and couldn't understand why I hadn't been able to naturally conceive. i was referred for ivf and it was explained to me that even with normal tubes and ovaries, endometriosis can affect the womb lining making it hard for a fertalised egg to implant etc. Also hormone levels can be effected that are needed to achieve a pregnancy. The good news is, people with endometriosis have high rates of success when going through ivf as the problem they have isn't with keeping/ carrying the pregnancy, it's just getting the egg to implant in the first place. I am proof it can happen because after 7 years of infertility and one round of ivf I finally got my little miracle in 2013. Ruby Hope. Good luck. Xx

  • Hi Heather, hope you don't mind me asking but I have severe endo and had surgery in 2014 we're just about to start our first ivf cycle but I'm really worried about the affect the drugs/egg collection will have because of my endo. I'd be interested to hear your experience x

  • My story is almost identical. No symptoms relatively normal life then suddenly 1 ruptured cyst then a year later stage 4 diagnosed and a laparoscopy. Now another year later after trying naturally for about 6 months, no baby but instead another large cyst leading to this time a full on laparotomy to remove. Now starting a course of zoladex to scale back the endo. This could mean another year of no baby making. basically facing IVF when the zoladex finishes.

    Just do your best to take it as it comes and stay healthy. When you are ready for IVF they will want you to be in peak health. Stress and side effects of endo over the past 3 years and the laparoscopy and laparotomy plus zoladex and depo provera shots etc have left me overweight so I can't have IVF! So focusing on getting healed from recent laparotomy then lose weight and begin IVF next year.

    You are not alone, we got to keep fighting this

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