It never ends!

When you think surely your body can't be even more of a pain in the neck..it does!

Have fought for 18 years to finally get listened to and diagnosed with endometriosis. Which has also caused my infertility. I am currently on my first round of IVF and started the 2nd stage of the Long Protocol injecting Menopur last Thursday.

Yesterday I had the 8 day scan. These scans are painful due to the endo anyway but they had concerns over a shadow on the image so I was probed 4 times (2 of which were because the machine wasn't working properly when tried.). Then told to wait whilst they got a consultant to have a look. So of course your mind starts doing overtime about what has been seen. Typical as was on my own there too.

Called into consultants office and was told the following (after each point when you think that is it there was another "also you have...")

1. Follicles aren't progressing well so up dosage to 300.

2. Concern of shadow on uterus which could be just thickening of the lining which is doubling on itself or it is a polyp. If a polyp then once collected eggs will freeze them and do a hysteroscopy. Then later do embryo transfer using frozen eggs, not fresh.

3. My uterus looks like it has never fully developed. Something to do with it is usually 2 parts which join when pregnant but I only have 1? I was confused by this and prob not understood it correctly as was being bamboozled with all the new info.

4. Uterus appears tilted.

4. They wanted me to have a proper mock embryo transfer, in the theatre room, legs in stirrups, full bladder. (They had tried a mock transfer the week before but not a proper one as I didn't have full bladder, wasn't in stirrups, no ultra sound guide and thought I should be relatively ok for the actual one.) As the dr wasn't happy with last weeks results. So within 10 mins I was taken down....this is when HELL started!

Can't fault the nurses/drs they were all lovely. I went in at 12 and didn't come out the room until gone 1! (had been at clinic since 10am) When did I was sobbing, body shaking, in such pain! First attempt they couldn't get the tube into the uterus and had been trying for ages and then I was already in lots of pain, crying and shaking. So they got another consultant to try..if I was happy to. I wanted to scream no! But wanted them to be able to do it or else worried it may end my IVF chances. But same thing happened. Eventually I had to ask them to stop. Which they agreed on and said I had done so well and been so brave. Didn't feel it! Felt like a failure. Smears, internal ultrasounds, intercourse, have always been painful for me so this was no surprise but it was the worst ever!

Consultant came and told me that my uterus is severely tilted and the neck of it is tilted over on itself! So they were struggling to get the tube in. She had almost got it in when I had finally cried out I'd had enough and could they stop. So she said that when and if we get to egg transfer day I will have to be sedated as will be less traumatic for me and easier for them to mess about and poke. Feel gutted as wanted be awake for this part and experience it with my husband.

But it was also like " I already have severe endo and all its horrible symptoms causing me, my life, my body misery, then needing IVF, now I find out my body has even more wrong with it! " Just so fed up. Would be nice to have a break from body causing issues and complications and for just once things to go smoothly! Must admit when in the recovery room it did go through my head "why am I putting myself through all this?!" Was just such an emotional, traumatic day.

Back tomorrow for a scan to see how follicles are doing and the shadow.

Sorry for the long post. Just needed to rant. Thank you for reading..you can wake up now :-)

4 Replies

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  • Omg, wow. So sorry you're having to go through this. I can't believe you had to wait so long to be diagnosed. At least now you know and I hope it all gets better for you from now on. Please keep us updated. You've got my support :-)

  • Hi magzz,

    Thank you ever so much for your reply and for reading my long post. Really appreciated. I hope things get better too.

    Had another scan today and got to continue on meds and go back on Monday for another scan. Feeling really ill with horrendous nausea, abdominal pains, fatigue.

    Hope your fertility journey is going well or has gone well.

    Once again a big thank you x

  • What a terrible ordeal. Sorry you had to go through all that, and on yr own too. :( Glad the nurses were nice, we rely on their kindness and help during this crazy ride don't we. I have severe endo which was diagnosed when I was 37 instead of 21! And it totally wrecked my fertility, so I know how you feel. It's so painful and affects so many areas of yr life. I'm currently flat out with a horrific heavy period and meant to be going to a anniversary party, but I just can't. It's too painful and so heavy. So I know how you feel when it affects you so much.

    I think it's wise to be sedated for your egg collection, you don't want to put yourself through that pain again and you'll feel better when you come around as you'll be calmer then, yes you'll be sore but it will be better for yr state of mind I think. After going through that you'll be nervous beforehand anticipating the pain again

    I really hope you respond well and you get lots of juicy healthy eggs! Lots of ladies on here have endom but had successful IVF stories. Lots of good luck to you. Take care xx

  • Thank you Hope23 for your lovely reply and reading my post.

    Sorry to hear that you too had a long wait to get diagnosed. I am 32 and got diagnosed last year aged 31. It is so silly isn't it. But also sorry to hear that you are having to suffer with this horrible disease. It is so frustrating when it interferes with our life so much. Doesn't get any easier does it. I was supposed to be out tonight but had to tell my husband to just go without me. He was reluctant as didn't want leave me. But why should he be stuck inside with me who is not best company.

    Yeh def right direction to go having sedation for egg transfer. Just frustrated as was looking forward to doing that with my husband there for us to both enjoy. But now I wont be aware of it and my husband wont be in the room. Infertility already stops a man and woman from feeling like it is something intimate, and a process done together and the egg transfer is the one thing you can do and experience together. Now my body is yet again dictating things and not in good way. If that all makes sense.

    At least it appears my body is producing follicles on the meds. I am Hoping they say on Monday that some time that week they will be able to do the egg collection.

    I hope your infertility journey is going ok or has gone ok.

    Hope your endo and current period pains give you some relief soon. Once again Thank you ever so much.

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