Appointment next week with fertility consultant.

Hi everyone.

Last month I had my laparoscopy and had endometriosis implants removed which my consultant believed to be the cause of my infertility and chronic pain.

I have had a flare up of endo pain since I ovulated ( really bad like before op) still ongoing which I will discuss with him.

Is there any other important questions that I should be asking him?

Is there additional medication you can take when TTC with endometriosis? ( Sorry if that sounds stupid) I had my NK cell blood test last year which came back slightly raised at 12% - previously he had agreed to issue a prescription for low dose steroids once I was confirmed to be pregnant- would it be advisable now I know I have endo to take this low dose steroids whilst TTC- should I try to push for them?

All the best to everyone on this difficult journey xoxo

8 Replies

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  • Hi Jess. hope you are doing okay, I may have to answer this post gradually, as keep getting disturbed today.

    I am stage 4 endo and have done a lot of research over the years, with 2 surgeries. My pain was also chronic, so I feel your pain. It's relentless. My pain is mainly ovarian too with awful uterine pain during my period.

    I would avoid additional medication. I only ever took paracetamol. I'd also read some random research I'd found about avoiding NSAIDs, as they aren't great for ovulation - although i am sure that's wobbly science, but they aren't great for the digestive system at all - which us endo girls can be overly sensitive too - so avoid anything ibuprofen or any anti inflammatories. i found my bowel symptoms improved gradually after stopping NSAIDS.

    Where was your endo? Did you have it on the ovaries? I have bilateral endometrioma and only one tube, endo every where and adenomyosis. Were your tubes okay?

    I replied to another lady a few days ago about some bizarre post i had read on Endometropolis (the endo closed Facebook group, I've learnt alot through it and it's incredibly lovely founder, Libby Hopton) Anyway, it's about taking antihistamines following ovulation, apparently it has helped 'some' women with endo to conceive and a leading American endocrinologist has explained why this could work. And the anti histamine was benedryl which is apparently safe when TTC and pregnancy. I was going to share a post about it on here but thought I'd just share individually. If you want to join endometropolis, I'd recommend it but it does get a bit grizzly, lots of surgery photos on there, as it's mainly a medical forum.

    Here is the article.. healthboards.com/drugtalk/b...

    Personally, I'd focus on easing the symptoms of endo with the endo diet. That is mainly cutting down dairy, wheat, caffeine and sugar. I'd say caffeine is a big no no.. I drink earl grey flavoured rooibos tea.

    My healthy eating prior to IVF, I really think helped me. I know that sounds corny, and diet alone will never get rid of endo, only good excision surgery does that. But, endo is a disease, therefore, an inflammatory process, so avoiding or cutting down on foods that increase inflammation is quite important. Let me know if you want any of the details of what i ate.

    I don't know much about NK cells, but I have read that these are raised in women with endo, as an immune system response. Whilst endo isn't classified an an auto immune disease (some argue it is, but it's not), women with endo are thought to have a faulty immune system. We should be able to kill off the endo implants, but we don't. This is perhaps why the immune system and its killer cells go into overdrive. So the theory goes, it kills off the sperm or embryo...

    As to the steroids, I really honestly don't know. I think your consultant will have to answer that.

    I had IVF after about 10 years of TTC it worked first time. I had never had my NK cells tested and was not on steroids. I guess it depends on whether you are going to try naturally or head straight to IVF? I was given a 6 month window of trying naturally after my endo diagnosis after which point i was told, go straight to IVF. I presume they have said the same to you?

    xxx

  • Sorry for the late reply I've been trying to avoid Google!!!

    Thank you for taking the time to write such an informative reply- that's so so kind. I'm still newly diagnosed so trying to get my head around it all. Wow 10 years hats off to you for not giving up ๐Ÿ˜˜congrats on the positive test ๐Ÿ˜

    The flare up of pain since ovulation was such a shock. I have been advised by fertility consultant to keep lactose free ( pain was worse with dairy products) and gluten free as these should ease my symptoms. My diet is very healthy- I'm vegetarian and I eat lots of soya,pulses, vegetables , fruit. With TTC I do try to limit my caffeine and I don't drink alcohol (the only time I do us when my period arrives- in not good at dealing with it)

    I really don't want to take any pain killers TTC ( I know paracetamol is safe but...) And things got so bad I was up all throughout Monday night in tears ( didn't take anything,) at that point I went to see a doctor ( he was very nice and reassured me paracetamol is safe to take-,think he was shocked I let things get that bad!!! And this doctor is normally known as a mean doctor!)

    The endometriosis was located in my pouch of Douglas ( I have no idea of the stage) and it produced both gynae and bowel symptoms as well as secondary unexplained infertility for 5 years and 10 months untill endometriosis was diagnosed.

    I just wondered if there was medication that can help with implantation for women who have endo ( I read online endo suffers have a poorer chance of implantation) I will have to wait and see what he says. I will ask what he thinks about the use antihistamines. ๐Ÿ˜

    I don't really remember that much the consultant said after the surgery- all I remember is the ovaries being normal, the tubes being clear and endo being found and some was excision some was ablated ( he said some thrown away and some was difficult to get to so he Lasered it I think ?) He didn't say anything about trying- we are seeing him this Thursday to discuss the way forward- hopefully we can try for a few months.

    I do take pregnacare and folic acid daily but as any women TTC for a while I'm always wandering what I else I can do to get a positive test! And spend too much time thinking and googling over things!!!

    All the best with your pregnancy xoxo

  • Hi jess1981. Pleased to hear that your appointment is nearing and hope you get some definite treatment plan offered. With regards to steroid use, they are usually given for just a short time, so maybe your consultant won't be keen to give you them now, because of the risks involved, I don't know. More questions for you to ask I'm afraid, but I hope that the consultation goes well and you can at last get cracking with the treatment you have waited so long for. Thinking of you as always. Diane

  • Thank you Diane- I will be led by whatever he thinks is best. Think I will feel better once I know what's what. xoxo

  • hey Jess, sorry I cant answer you questions or offer advice! However, just wanted to wish you all the best for your appointment. I hope it goes well, make a list out so you dont forget anything!!xx

  • Thank you for the reply -i always do that it's too easy to forget!!! I hope you're doing ok xoxo

  • Hi Jess, not medication but ConceivePlus and Preseed really help from personal experience. Good luck xx

  • I hope your appointment goes well. Take your list of questions and your note pad to jot down the answers/information.

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