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  1. #1
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    Default Introducing myself

    Hi allI am looking for some support as I'm going through a tough time. In the past four years, my health has constantly been an issue due to the following:
    • 2010: Coeliac Disease
    • 2011: Fructose Malabsorption
    • 2011: Anxiety
    • 2013: L4/L5 lower back disc bulge
    • 2014: Hip dysplaysia resulting in labrum tears in both hips
    • 2014: Adenomyosis and probably Endometriosis
    • 2014: Investigating Rheumatoid Arthritis
    No joke at all; it's been particularly rough the past 12 months as my pelvic area has been in a lot of pain from back, hips and now uterus/ovulation/menstruation pain.I'm 30 years old, no kids yet, not really planning to have them for a few more years. My husband and I were married in Dec 2013. We are struggling a bit as a couple as my libido dropped significantly in 2010 after the Coeliac Diagnosis and family events that increased anxiety. I'll be having hip surgery next year to fix the labrum tears as a result of hip dysplaysia which involves about a month off work. Then depending on what the gynaecologist says (appt in July), I may have to have a laproscopy.The Adenomyosis and Endometriosis really scares me as I have always thought my fertility was a problem, even when I was 22 I was convinced. I'm not saying I'm psychic, I just had a bad feeling. Anyway, right now, I'm not sure what to think. The doctor says she knows plenty of women who have had kids with both of these conditions. I guess a key problem is my emotional state, I haven't cried in months, I don't have any emotion or feelings left, I just feel numb.
    Last edited by pvroom; 17-06-2014 at 10:51.

  2. #2
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    BH-KatiesMum is offline Community Manager
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    wow - you have had a hard time of it.

    I hope some of the wonderful girls around here who have some of those things will be able to give you some advice.

    Have a look in this thread as I think some of the girls there might be able to give you some advice


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    Poor thing - you've had a rough trot the past few years.

    I have endometriosis, scar tissue from previous laps and a previous infection, and I conceived naturally on the second cycle. I had a lap at 6 weeks pregnant due to a large cyst they found as well, and they found more ovarian endo while they were in there but left it alone because I was pregnant - so I was able to conceive even with endo covering my ovaries. I was so concerned about it but in the end I didn't need to be. It's true that some women will have trouble conceiving, but you won't know until you start trying unfortunately. If you do have trouble, there is help available, make sure you keep that in mind too.

    I was also diagnosed with Crohn's disease last year so I know what it's like to have ongoing gut trouble too. I also have joint pain (hasn't been investigated as of yet) which is most likely linked to Crohn's but as I am pregnant they are just doing the "wait and see" approach as the drugs used to treat it aren't pregnancy friendly.

    After the crohn's diagnosis I was a mess - I was extremely physically unwell but emotionally I found it tougher. I went to see a counsellor to talk about all my fears/worries and to process my feelings surrounding the diagnosis (the drs had missed it over and over again - like you I knew something just wasn't right for many years but they didn't listen). I found this really helpful as it allowed me to process everything and then move on to how I was going to manage my health. I would recommend seeing someone about what you've been through, and they can also help you manage your anxiety.

    There are lots of people that will understand what you are going through - find people that can support you IRL, and forums are also a great place to go for support. I joined a crohn's forum and have found that invaluable - its good to know you are NOT alone.

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    oh you poor thing. I couldn't read and not reply. you sound much braver than I would be.

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    I'm so sorry to hear what a horrible few years it has been
    Congratulations on getting married!
    All the best for your upcoming surgeries.

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    Thank you for the support. I'm a bit freaked out about the Adenomyosis as I know Endometriosis is a lot more common and also it seems like Endo isn't as bad for TTC, however Adenomyosis seems a lot less documented and commented on, even in this forum.

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    Hey pvroom,
    Nice to meet you, i'm new here too.

    Good on you for seeking out support, you've certainly been having a rough time. I've been through a few of the things on your list and I'm guessing you have to deal with some pretty bad/uncomfortable gut issues - they are just the worst and so hard to get any real answers or relief from, and just really exacerbate underlying anxiety and everything else.

    I felt a lot of grief when i finally got the Endo diagnosis because Endo can be responsible for all the gut problems that mimic the symptoms of celiac/fructose malabsorption/IBS, yet GPs rarely think to investigate Endo which is why it takes on average 10 years to get a diagnosis (and therefore treatment).

    Anyway, I just wanted to say hi and offer some hope that the endo treatment might improve your quality of life if you end up going down that path.

    Having a good specialist is particularly important so make sure you shop around for recommendations.

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    Thanks Hibbswife!

    I saw a gynaecologist today and he gave me two main options

    1. Start trying and see if anything happens for 3 - 6 months
    2. Have a laproscopy, get Mirena IUD inserted and do some testing for 1 year and then try

    I would prefer to try and avoid surgery so I'm hoping my husband will agree to start trying in maybe 3 months

  9. #9
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    Hi @pvroom
    have you considered seeing a Reproductive Endocrinologist for a second opinion?
    if it's Endometriosis then an RE will be possibly more experienced with that - one thing I have found is that I've felt better not waiting when I feel like things aren't right... I saw one specialist initially who was very confident I had a regular cyst that would just resolve itself and not to worry at all- I got a second opinion from an RE who said based on a full history that severe endo was most likely the issue and it turned out she was right. Annoys me that I lost several months because of the first specialist but I'm so glad I got the second opinion.

    its hard for husbands especially if they haven't been thinking about kids yet -- I think they maybe struggle with a transition from 'lad about town' to dealing with serious stuff... Mine came round eventually though.

    good luck.

  10. #10
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    Hi @ScubaGal, thanks for your post. My husband and I discussed it over the weekend and we have agreed to

    a) I've gone off the pill now so I can get the blood tests done in the next two months
    b) we won't use any protection, he will withdraw from now until Sept/October
    c) he is having surgery July 29 and so he'll be out of action for about 1 month
    d) once he feels up to it, we will start trying for real

    If I get pregnant before July 29 (unlikely I think) then it will be a blessing but I think starting in Sept/October will give me time to get prepared and it shouldn't be too long to wait.

    If I don't get any results by Feb next year, then I'll go back to gynae for a laproscopy.

    Managed to have sex twice on the weekend with much less pain, i think my pain during sex is 50% endo/adenomyosis and 50% stress


 

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