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  1. #1
    ICN Member Kara29's Avatar
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    Lightbulb My Husband and I are now trying to have a baby but we are infertile

    We have been trying for 3 years (after my bladder was removed) We are having many fertlity problems. I am having trouble and so is my Husband. We are seeing an endocrinologist/fertility specialist.We have been seeing him for 2 years now. I have done 8 rounds of clomid all of them were done with IUI's. My Husband has a low sperm count so we have to do artificial insemination no matter what. My doc is putting me on Follisitm injections in a few months and (2 rounds of it) and then he is moving to IVF. Everyone always asks me if my new bladder means I can't have kids. It has nothing to do with that part of my body. My urologist in Boston is all for me getting pregnant and having some sort of life. I do worry about hormones like high progesterone levels causing urinary urgency and frequency thought. I took Clomid for 8 months and had some trouble with that. I am now on birth control because I developed a cyst due to the Clomid. I am hoping the cyst goes away and I can try again in a few weeks with my injections. Having IC is a nightmare in itself but so is having infertility. Sometimes it feels like it's never going to stop. I just want to be normal. By the way I am now off of all of the medication I was taking for my pain and my new bladder. It took me 3 years to get off all of it. It was not easy, but I did it. I was on like 12 different medications. One of them was a heavy duty narcotic called Fentanyl. It took me 4 months to withdrawl from that. Now I am med fee and hoping for a baby.

    Thanks for listening,

    Kara
    Last edited by Kara29; 10-31-2005 at 07:22 AM. Reason: Wanted to add that I am off of all medication now

  2. #2
    ICN Member tigger_gal's Avatar
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    :woohoo: :woohoo: sending lots of good vibes your way. I am so glad that everything worked out for you and you are happy.... I am sure when the time is right you will become pregnant.. and be the best mommy there is..
    'The will of God will never take you where the Grace of God will not protect you.'

  3. #3
    ICN Member SandyRN's Avatar
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    I agree, I'm sure things will work out for you. Lots of women have to go through what you are, and while it's not fun, and it's scary and frustrating, many, MANY couples have great success with the new treatments.

    Medical advances in infertility are simply amazing. Please let us know how you're doing and update us.

    I'm glad you're no longer in pain from your bladder surgery...

    Take care, Sandy

    Oh, and to the board!
    *IC-- Summer 2004; PFD--October 2005
    *Fibro--Fall 2000; CFS-- Fall 2000
    *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

    Total Abdominal Hysterectomy--adenomyosis--9\08

    Colostomy surgery due to rupture of lower large intestine (sigmoid colon) ---4\18\09--Had peritonitis, almost died after surgery as I was very sick. Learning to deal with that and get healthy enough for *possible* reconnect surgery January of 2010...if not this surgery saved my life, so I can, and will live with it....happily!

  4. #4
    ICN Member massagedoula's Avatar
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    Best of luck!!!!
    30 year old Mother, Midwife, Birth Doula, Herbalist, and Massage Therapist with sudden onset of IC approx. 2/16/05 (after a PAP smear and routine gynecological exam). I tried a HUGE list of natural and alternative treatments (including Cystoprotek, Desert Harvest Aloe, Aloe gel, Glucosamine/Chondroitin, L-Argenine, Quercitin/Bromelain, Marshmallow Root...etc) for the first 9 months of having IC, without much relief, until I finally researched and started Elmiron.

    My experience:
    ~Previously took Elmiron 100mg three times a day
    (9/29/05-7/06)
    ~Experimented with dosage (1-2 Elmiron a day recapped into a plain gelcap) and did well with occasional mild flares. (7/06-9/09)
    ~Stopped all together at the 1 year mark (9/29/06) for 10 days. Still felt good, with low-level symptoms.
    ~Decided to go back on it (10/16/06) to see if another year on it will bring me into full (zero symptoms) remission. Currently taking 1-2 pills a day, recapped into a plain gelcap.
    ~ 6/08...Tried to go off Elmiron again, had huge flare at the 3 week mark, went back on 100mg once a day for maintenance.
    -I went off Elmiron for 2 months due to pregnancy and had a complete relapse of IC symptoms to pre-diagnosis levels of pain/frequency. I then went back on Elmiron at 10-12 weeks, but was unable to take it further due to severe morning sickness. The 2nd/3rd trimesters were MUCH better IC-wise, and postpartum is the best I have felt in years. I am no longer on Elmiron for now.
    -20 month postpartum remission from 4/17/09 to 12/10/10.
    -Out of remission after a pap smear on 12/10/10. Pap smears are obviously the main IC trigger for me. Currently trying to cope with loss of the remission.

    Also doing:
    ~Sugar-free/gluten free and strict IC diet (With an emphasis on organic, alkaline and whole foods)
    ~Prenatal DHA/Fish oil supplement
    ~Vitamin D supplement
    ~Culturelle probiotic

  5. #5
    Support Volunteers Kathi's Avatar
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    Kara, how wonderful to hear from you & I's so happy about the decision to have a baby. I'm sure God will bless you soon, no matter what means it will take to get it done. I think of you often. Kathi
    One Day At A Time
    Kathi

  6. #6
    Registered User holles's Avatar
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    good luck to you! it's a frustrating struggle, but i hope you have success. i'm relieved to find i'm not the only one who had bladder flares after fertility medications. the clomid cyst will probably go away after a cycle or two. i had one after a clomid cycle, and it went away by the next month.

    wishing you success. i know how hard ttc with fertility problems is. we tried for several years before having to move on. i hope you are sharing some good news with us soon though.

    (((hugs)))
    holly 35
    IC, endometriosis, graves, chronic uterine infection
    no kids, just me and my man (and some furry things that beg for food a lot)
    "if the Lord has set you free, be free indeed"

    IC dx 2003/mysteriously developed while on depot lupron to treat endometriosis
    treatments tried so far:
    elmiron, elavil, pyridium, urelle, heparin instills, doxycycline regimen (most successful, but not completely), IC diet

  7. #7
    Support Volunteers
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    Many positive pregnancy vibes headed your way!!~~~~~~~
    Tons of support,
    Jaime

    IC angel helping families in need for the holidays. holidayassistance@ic-network.com

  8. #8
    Registered User
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    I'm in the same boat

    My first IC flare came after my first round of clomid (both my husband and I are fertility challenged).

    I just went off the pill to ttc, on comes a flare! I'm dealing with it though, taking it step by step. This is something that we both want so I want to explore all options before throwing in the towel...

    Good luck, and I know you'll come through it all! So many women have fertility issues, and from reading the boards, a few of them have IC as well.
    And the conceive! Hang in there!!!!

  9. #9
    Registered User
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    Kara, I wish you the best of luck.

    What hospital are you attached to in Boston? I'm from MA and lived in Salem for 8 yrs, though I moved to NYC about a year ago. Boston has some of the top hospitals in the country and you should be in good hands.

    I'm 37 and 38 weeks pregnant with my first. I've had IC for eight years prior to my pregnancy and the IC has, fortunately, been in semi-remission throughout this pregnancy. I have had my flare ups and did have a uterine fibroid, which made me want to tear out my hair. I've also had the frequency and urgency of urination, especially during this last trimester, which I can grudgingly tolerate.

    What I'm saying is that it can be manageable being pregnant with IC. Do not give up hope. Take it one step at a time.

    Good luck and hang in there!

  10. #10
    Angel watching over us
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    Kara,
    I had fertility problems as well both conceiving and carrying the pregnancy. Good news though...that special angel we worked so hard to get started kindergarten this year. Hang in there and fingers crossed from this side of the country that a little one is on the way.

    Hugs,
    Barb
    (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

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    I have learned all about life in 3 words: It goes on! :D--Robert Frost
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    "Spirit is an invisible force made visible in all of life"--Maya Angelou
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  11. #11
    Support Leader Sarojini's Avatar
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    Sending my best wishes that a little one comes along for you in the near future!
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

  12. #12
    ICN Member Dixiefireball's Avatar
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    Best wishes and good luck. I pray you are able to have a health baby when the time is right.
    Medicine taken daily or as needed:
    1. Heaprin and Marcaine rescue installment 1 to 3x daily as needed.
    2. MS.Cotin 100mg 3x daily
    3. MSIR 30mg 1 or 2 every 4-6hrs as needed for breakthrew pain.
    4. Fentanyl 100 mg Change every 48hrs.
    5. Gentamicin 80mg install after each rescue treatment
    5 Leviquin 500mg self start as needed.
    6. Klonopin 1 or 2 daily as needed.
    7. Prosed/DS as 1 every 6hrs as needed.





    I have IC, but IC doesn't have me anymore!

  13. #13
    IC Friend
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    I feel for you! I am not yet trying to have a baby, but I am getting in "the mindset". My husband and I also face obstacles - but I know it will be okay. He has a rare disease that was just diagnosed in June after a year and half of agony. For the disease (Familial Mediterranean Fever) he must take colchicine, which causes his sperm to be immobilized. In order to get preganant, he must go off the medicine for 3 months. That may not seem like much, but during that time he will suffer from a fever and other rather severe symptons for 3 days out of the week on average. I am not trying to compare situations with you, I just know how it feels to question the process and the decisions you are making. On one hand, I fear that pregnancy will upset my IC and I worry for myself and the baby. On the other hand, my husband must undergo a rather extreme situation himself. However, his strength gives me strength - and he has no qualms about going off his meds - he is ready to start a family and so am I.
    I also have removed several medications from life - and it was hard. I admire you for being med free. (Although I am all for taking the meds when they are needed.) That means you are a very strong person and I know you will make it through the times ahead.
    When I think my pain is rough and that these decisions suck, I remember that this disease is most likely not new. I know that countless women suffered when there were no meds, no TENS, no physical therapists, and only natural child birth. I know that we can do it too.
    Bless you and I hope everything works out the best for you.
    By the way - how does the new bladder work for you?
    ddmarie

  14. #14
    Forum Manager ICNDonna's Avatar
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    Kara, I sincerely hope to hear from you soon that you are pregnant! It would be like your fairy tale come true. I know how much you have gone through to get where you are today. And you deserve a baby!

    Sending gentle hugs,
    Donna
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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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  15. #15
    Support Volunteers ICNJess's Avatar
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    Kara,

    I haven't been around much lately but popped in to see what was shaking and I found your post here. You have been through so much already! I understand how frustrating this is for you. Doctors told me I would never conceive a child without a lot of help from the medical community. I have PCOS, and every time I would go off of birth control I would bleed for a long time and develop cysts. I pretty much had given up hope, as I did not want to go through IVF, and the Glucophage made me sick.

    Then, one month, my period was late. This was not really an unusual occurance for me, plus I had horrendous cramps. I figured it was a cyst. Yet, something told me to pee on a stick LOL. I'm now almost 22 weeks pregnant with my first, and I thank God every day for this miracle. I relish every kick and movement. This baby was not supposed to even happen, and yet, here it is!

    I just wanted to say hang in there, and that I will keep you and your husband in my prayers. I know IVF and IUI's are not an easy road, a friend of mine and her husband are now in the process of IVF. I admire anyone who can go through all of that, and I am sure God will bless you with a miracle of your own.

    Hugs,
    Jess
    Mommy to 2 crazy, wonderful kids and wife to the most amazing man in the world!

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