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  • What would you do? (long)

    I had a stroke due to a birth defect and a blood clotting disorder called factor V leiden. Because of the factor V leiden, I can no longer take birth control pills. I also have endometriosis and ovarian cysts that occur very frequently and are constant when they do occur. I was on depo for quite a while, but because my body produced a lot of progesterone anyway, my gyn had me on the nuvaring estrogen insert. He had me just skipping my periods so I didn't have bad periods or grow any more endometriosis. Since stopping the BC, my breasts have been very sore, and the periods haven't been very pleasant. I moved to Chicago and found a new GYN. He told me that getting pregnant would be difficult...I would have to have heparin shots twice daily because the added hormones would cause clots. I thought it would just mean bruises for me. I've learned that it could mean more difficulties for me, but there are chances of stroke for the baby, clots in the umbilical cord, increased risk of miscarriage (on top of the increased risk because I have IC). I have the interstim implant, so the suggested method of delivery is c-section...but being on blood thinners makes that sort of risky. I have the name of a very revered perinatologist to consult about all the risks. My husband and I are thinking that adoption may be the best option for us. My parents and in-laws are perfectly fine with this. I'm also thinking that with my problems---and the fact that my birth mother died at 42 of ovarian cancer--that perhaps a hysterectomy might relieve a lot of my symptoms. I really don't know about the hot flashes, etc. I just don't know what to do. Am I missing any other options? I am 26...but when my husband and I meet with the perinatologist we will be making a decision about permanent birth control if the risks of me getting pregnant safely are too high.

  • #2
    Good luck with the perinatologist. I hope you have some more answers after meeting with him or her. If it was me, I would definitely get a second opinion from another GYN before doing a hysterectomy. Maybe find a really good high risk GYN and see what he or she thinks.

    Good luck! kissing
    Kim

    Diagnosed August 2001

    Current IC meds: Elmiron (since 2001), Levaquin (one pill after intercourse to prevent UTIs), Effexor (for depression & anxiety)


    Past IC meds: Amitriptyline (Elavil), Hydroxyzine (Vistaril), Detrol LA, Lexapro (for depression & anxiety, but also helped my IC) (They all helped, but I was able to discontinue them.)

    I've been virtually symptom free and able to eat & drink whatever I'd like for about 8 years now.

    *****************************

    “We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.” ~ Viktor Frankl

    “You cannot control what happens to you, but you can control your attitude toward what happens to you, and in that, you will be mastering change rather than allowing it to master you.” ~ Brian Tracy

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    • #3
      Your story sounds a lot like mine. I was on depo and also tried Lupron but it didn't help my endo. I had two successful pregnancies and then a hysterectomy. I kept my ovaries on the off chance the endo would stay gone but it didn't so 3 years later I had the ovaries removed also. Because I was taking estrogen after that the endo still continued to grow-even with no female organs! So I had an extensive "remove the endo" surgery and have been fine ever since. I take estrogen and progesterone together now to help keep endo from going on and on. My pregnancies were considered high risk and I was on bed rest etc... I had all the hormone shots etc... to get pregnant but my doc didn't seem real concerned about the blood clots even though they are a risk. Maybe he should have been! Anyway, good luck with your decision. It's not an easy one to be faced with.

      Pam
      Live life to the fullest day to day. The best way to eat an elephant is one bite at a time!
      _____________________________

      DX: IC - November 2002 after hysterectomy
      Interstim implanted March 2006 - died May 2011
      Interstim replacement June 2011
      Meds: Pain meds, muscle relaxer, cystex, and marcaine bladder instills as needed.
      Docs: Pain management doc, urologist, family practice

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      • #4
        I abolutely think talking with a perinatologist is the right direction for you. There aren't many physicians with this specialty and you're extremely fortunate to be able to see one.

        Once you have talked with him, you should be in a better position to make your decision. I know it won't be an easy one.

        Sending an encouraging hug,
        Donna
        Stay safe


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        Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

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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.
        [3MG]

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        • #5
          Aww I am so sorry you are going through all of this. I hope that the new doc can help you and that the specialist has some answers. Good luck.

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

          Comment


          • #6
            My sister had a stroke at the age of 18. She had a long recovery road. (Therapies and such.)
            She had just had a son when this happened.
            The neurologist told her it would be risky for her to ever have children again. So with only condoms as their form of bc, she became pregnant four years later. It was very high-risk. She had to do the heparin shots in her stomach. When it got to be too much there she had to do it in her upper leg. And just switch back and forth.
            I'd never seen so many bruises on a persons body.
            She had a tubal ligation (sp?) after that baby.
            I'm happy to report that her son is now 13, and her second, a daughter, just turned nine.
            My sister has to take coumidin (sp?) the rest of her life. But she's never had problems since then. She'll be 30 this March.

            I think it's great you're talking to all the high risk physicians you can. Maybe it will work out for you.
            Just know whatever your decision is, your playing it smart. Keeping your options open. You sound like you'll be a great parent whichever route is best for you.

            If you need me to ask my sis any questions for you just email me. (It's at the bottom of my post.)

            Take care and let us know how it goes at the doctor's appt. Hugs!~~~~~~
            Tons of support,
            Jaime

            IC angel helping families in need for the holidays. [email protected]

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            • #7
              Hi Mimi,
              Hugs to you, I think I have told you my dr put me on megas (megastrol) to stop my periods, that was in october, I haven't had one period since but had spotting I have to go in for a vaginal ultra sound to see if my uteris is hardening.. these pills are to send you into early meno-pause, no periods no extra pain so far, I flared the week b4 the week of and the week after with my periods. you want to talk more about it email me ok wink
              brat
              'The will of God will never take you where the Grace of God will not protect you.'

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              • #8
                One option I didn't see you menion but I saw Pam did was Lupron. I am still recovering from a full hysterectomy at the moment....hot flashes can be a pain but I kept ice by me and wore layers....kept a fan by me (wanted to buy a small hand fan) survivable compaired to the alternative.

                I see adoption as a beautiful thing....a gift of love from both ends. If you and your family are comfortable with it great....becuase if Lupron doesn't help you...it would still be there...I understand why you may not want to try natural birth at this time anyway...I was sure I wasn't healthy enough anywat too.


                big hugs.....feel free to Private Message me or email me if you would like to talk. If you email me please have a subject that is specific so I don't sucpect virus...too many theese days.


                Good Luck to you.
                Faith, Hope, and Love,
                Katrina


                I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                or find me on facebook http://www.facebook.com/kat671?ref=profile
                Be the Miracle! & Pay it Forward!

                [email protected] please contact me...I am here to help!

                Comment


                • #9
                  I used to work on a high risk ob unit where we had all sorts of complex issues with pregnant women. One was the use of heparin for other health problems and keeping the pregnancy going as normal as possible.

                  If you decide to get pregnant, and do get pregnant, be prepared to spend 12 weeks or so of your late pregnancy in the hospital in the high risk obstetrics unit.

                  You will be monitored daily with blood draws to check the clotting factors, your baby will be monitored extensively, for heart rate, growth rate, etc, until you deliver.

                  If you are to have a c/section, remember that it has been done and done MANY MANY times with wonderful outcomes. Toward the planned delivery date they may lower your heparin dose to prepare you for surgery, but if you have a perinatologist, and are in a good hospital designed for emergencies, you are in good hands, and the odds arent as bad as they seem.

                  You cant be at home during those last, crucial months because of the constand monitoring you and the baby need, but its a small price to pay to have that lovely bundle in your arms.

                  I can honestly say I've never seen a bad outcome when it comes to heparin......there are strict, and I mean STRICT protocols the nurses follow to monitor your pregnancy.

                  Good luck to you and feel free to pm me anytime.

                  Sandy

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                  • #10
                    I am not allowed to be on any hormones because they increase my risk of developing blood clots from 5-7% to 35-40%. I have an appointment with a new hematologist in this area as well as a new neurologist...to check up on my stroke outcome. I feel fine, other than the coumadin side effects. I'm adopted, so that's definitely an option for me. Depending on what the perinatologist says, DH may get a vasectomy. I don't mind a bit of bedrest, but my child having strokes, etc. is just horrible. Oh, and DH watched me have TIA and a stroke, I don't want to have him go through me having pre-eclampsia or anything else like that.

                    Comment


                    • #11
                      Dear MimiinChicagoland,

                      You have met someone who knows a lot about factor 5 liden! The Hemotologist found the factor 5 after two different hospital stays that left my husband, David with clots from his popetial space (behind the knee) as far up into his Aorta as they can see on Ultra Sound. My husband and his Mother both have it, my Mother-in-law wants my daughter tested since there is a chance she could have it, I do not know about that right now?
                      My hope is for you that you are able to live a happy, healthy life dispite this obstacle.
                      My husbands Hemotologist told him Factor 5 comes back from the days of the Vikings, the Vikings would have duelings, (sword fights), thus through ages of evolution the blood evolved to have properties that would clot much faster than that of the opponent, it took this factor to win and stay alive, causing the wounds in battle to quickly clot up so to avade death, he with the thickest blood wins!
                      Now it has become a weird evolutionary problem that causes many women to have to avoid hormones (BC) and HRT, men and women are at higher risk of strokes, DVT's and Pulminary Embolis because of the risks it causes, you may allready know this I just found it so fascinating!
                      I only hope this is a small obastacle for you, I try to remember that each day is a great gift given to me and my family buy God, that having my Husband next to me every night is such a blessing!
                      I wish only the best for you and your family and will pray there is an outcome that is joyous and brings about peace inside of you, instead of living in this fear of the unknown.
                      Much love and concern,
                      Feel free to e-mail me at [email protected]
                      Jessica Day JessicainArkansas

                      Comment


                      • #12
                        Jessica, if I were you, I would have your daughter checked for factor V leiden before she goes on birth control pills. I had a PFO hole in my heart (birth defect) that I was unaware of until I had my stroke. It was after the stroke that blood tests revealed the factor V leiden that caused the clots to form and then pass to my brain. The birth control pills gave me a 40% chance of having a clot...the hole having a little spot by it that allowed a clot forming pool did the rest. The doctors said I was a stroke waiting to happen. 25% of the population have a PFO and most don't even know it. I'm adopted, so I didn't know the factor V leiden was in the family. Its a simple blood test. Other than the stroke, I've never had a blood clot..but I've been on BC for a long time. God was really good to me.

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                        • #13
                          I hope I wasn't mistaking you....Lupron isn't hormnes....it does something to your brain to keep your body from making hormones.....
                          Once again I hope the best for you.
                          Faith, Hope, and Love,
                          Katrina


                          I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                          IC Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
                          or find me on facebook http://www.facebook.com/kat671?ref=profile
                          Be the Miracle! & Pay it Forward!

                          [email protected] please contact me...I am here to help!

                          Comment


                          • #14
                            I have endo too. Currently I am taking Lupron Depot for the 2nd time. I am 34 years and this April I will turn 35. I live in a small town and every person I know wants to know when I will be getting married and having babies! Well, I usually end up telling them I probably won't be having babies cause of my conditions and my age. I feel that I just can't take the risk of having a baby that might be sick. I often think of adopting when the time is right. Marriage, well that's another thing. Why do people insist on iquiring when I am going to get married? Is it that important to them? I am just plained tired of it all. I get asked these questions weekly. I just wish people would stop asking me or I wish that I could think of a reply that would shut them up right then and there.

                            Comment


                            • #15
                              I know how you feel, Artic. I get tired of people asking me when I'm going to get pregnant. Its no ones business. I just try to be vague. If someone is an $%% and persists, I can't be blamed for my response. Thanks for explaining what Lupron is Katrina. I'll ask about that--it might help me. I really don't want to have a hysterectomy, but I'd like to control my endo and cysts. I also have fibrocystic breasts, so if I controlled the hormones, it might help a lot. This is the kind of alternatives I need to know about. (Can it keep you from getting pregnant, too?)

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