Endowarriors!

Discussion in 'Trying To Conceive' started by alicarr74, Oct 2, 2013.

  1. alicarr74

    alicarr74 Well-Known Member

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    I wanted to start a thread for girls with endometriosis where we can update each other how our TTC adventures are going :)

    To start off, I have stage three endometriosis. I have had two robotic laproscopy surgeries, one in Nov 2010 and the other Jan 2013. It has effected me since my first period, which was six months long at 11 years old. I am thankful for the doctor that I have, because it was almost too late when we found out, I was 18 years old.

    What's your guys(gals) stories?
     
  2. SweetPotatoPi

    SweetPotatoPi Love & Happiness...

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    Wow, the things that we contend with as women. I'm glad you have a doctor you trust alicarr. I don't have endo issues as far as I know but wanted to give you a bumpity.
     
  3. alicarr74

    alicarr74 Well-Known Member

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    Well, you definitely don't want it, but thank you very much for the bump and response :)
     
  4. SweetPotatoPi

    SweetPotatoPi Love & Happiness...

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    That's what I tell women about the mess of crazy I deal with too, "You don't want this, it sucks like you wouldn't believe!" :dohh: GL doll!
     
  5. Fleur29

    Fleur29 Well-Known Member

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    I don't have endo either but have a friend who has it very severely - she now has a beautiful little boy! Lots and lots of luck to you xx
     
  6. alicarr74

    alicarr74 Well-Known Member

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    Thank you :) We have gotten pregnant once, but it was a chemical pregnancy, so we are still trying! Let her know that there is going to be an "Endomarch" in D.C. in March, if she is on facebook tell her to look into the group at https://www.facebook.com/groups/MWMFE2014/ we have precinct managers for each state :)
     
  7. alicarr74

    alicarr74 Well-Known Member

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  8. DragonflyWing

    DragonflyWing Well-Known Member

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    Hi alicarr!

    I had a laparoscopy for endometriosis in 2008...it had also been affecting me since my first period at 12. Took 12 years for me to get a doctor to take me seriously enough to do the surgery. Endo was removed from the cul-de-sac behind my uterus, and adhesions were removed from my right ovary and the side of my uterus. There was some scarring that indicated the endo had been more widespread at some point, but birth control had shrunk the lesions. After the surgery, my pain was SO much better for a long time.

    3.5 years later, I conceived my twins without any trouble. After I had them and my periods came back, they have been gradually getting worse and worse and I fear the endo might be coming back. I'm guessing if I don't get pregnant again soon, I'll need another laparoscopy within a year or so.
     
  9. itsnowmyturn

    itsnowmyturn Well-Known Member

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    I have endo. It affected me as a child with unexplained stomach issues that went away but came back once I started periods at 11. Was never too bad until I came off depo at 18.

    It started by being pain every now and then when I had sex, then progressed to every now and then with or without sex. When I was 20 I started to notice a pattern and it was coming every 3 months and lasting for a week, then it lasted 10 days then 2 weeks. Eventually it progressed to every 2 months lasting for a week.

    I had surgery in Sept 2011 and again march 2012 with both of them they fell in the months my pain was due and sure enough it came right on time, I didn't get any relief at all from surgery. Eventually I change gynae because they were basically telling me there was nothing more they could do. My new gynae put me on zoladex for 6 months, which ends next week. I have had zero pain since being on it and feel like its given me my life back, the endo pain completely took over and the months it was due to flare up I was just anxious all the time.

    I'm now dreading my pain coming back without the zoladex, it has progressed over the years so I'm sure it will continue to do so but I'm worried that having relief from it for a while may make it worse when I stop the treatment. I was offered another 18 months of treatment with hrt but I declined as wanted to TTC

    Terrified it may have affected me but I also know that a lot of women with endo have happy healthy pregnancies so I am trying not to let it concern me
     
  10. alicarr74

    alicarr74 Well-Known Member

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    Well, at first for me, my doctors thought I was sexually active at 11, thought it might be my kidneys because I had a lot of issues with Urinary Tract infections, they ruled that out, then tried to see if I had a bleeding disorder , eventually ruled that out. They eventually just said I was lying because I wasn't coming in crying. I moved to TN and my doctor knew it from the start, but he also doubted how bad it was, and he did not like to give surgery to someone so young (I was 18). I pushed him and he finally did it and told me if I had not pushed him it would have reached my other organs. Since then, he listens to me a lot more and knows I am not exaggerating.

    The first surgery I continued to stay on birth control, so the first year was wonderful, it was like I had never had sex before because it felt so much better. Of course it got worse again, last year, so I got another surgery this January, which is when my depo shot wore off. This year has been pretty brutal, at first I was bleeding every other week, we tried a low dose BC to regulate it, well it gave me every single side effect possible. We dropped the BC and just started clomid. It has been bothering me more and more over the months, but I am hoping for pregnancy to help it. Good luck getting pregnant, but I am happy that you have had a successful pregnancy and delivery :thumbup:

    There is a facebook page, which is also for the march for endometriosis in March in Washington D.C. , it would be great to have you guys on board, there are precinct managers for each state! https://www.facebook.com/groups/MWMFE2014/
     
  11. alicarr74

    alicarr74 Well-Known Member

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    Well I told my doctor I did not want to go on medication, because I wanted to be aware of what my body was doing and also the fact that I see people get addicted to pills more and more where I work. I also experienced pain after my second surgery immediately because I was not on the depo shot anymore, but my first surgery made sex feel wonderful, because I was still on BC. I will keep you in prayers that you will not experience much pain while you are TTC, because once you get pregnant that will alleviate the endometriosis as well as slow it down a bit. After my surgery I had a period every other week, then went to a low dose BC to try and regulate it back out, it gave me many of the side effects, so I immediately stopped it. Next step was Clomid, and I actually got pregnant and ovulated that first month, but it turned into a chemical pregnancy, I am sure because my body was not ready. My doctor advised me to have sex before bed and sleep with the sperm (I am pretty sure that is how I got pregnant the first time ) and that if I get a UTI then I can get medication. Do you know if you are already ovulating?


    Good luck!!
     
  12. BrandiCanucks

    BrandiCanucks Mommy of 4, WTT

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    Hi there!

    I was diagnosed with endometriosis in February 2008 after two miscarriages 10 weeks apart. After the first miscarriage, I was in constant pain, every day, that got worse when I got my period. I went away when I got pregnant again and came back after my second miscarriage. My OB did a diagnostic lap and found stage 2 endometriosis, and got rid of it and then said he wanted to put me on the pill with the start of my next cycle, but my next cycle never came, and I gave birth to a healthy baby boy later that year. It started coming back in 2010, but I got pregnant again and have been okay until recently. My periods have been really heavy the last few months, and extremely painful.

    Last week, I had a tubal reversal surgery and I'm hoping to start TTC later this month. My follow up is on Tuesday, so I'll find out then if the doctor saw anything.
     
  13. itsnowmyturn

    itsnowmyturn Well-Known Member

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    I don't no my cycle or anything because I haven't had a period for about 6 years and even then it was periods during my week break on the pill so don't really no much about when I ovulate. As I say I'm currently on zoladex which wears off exactly a week today (very exciting) so that has obviously halted everything because my body has been in a temporary menopause for the last 6 months. I'm hoping ly cycle comes back straight away so I can start TTC but I'm not convinced it will I will sort of be in waiting limbo although I will still be trying just incase I ovulate without knowing
     
  14. alicarr74

    alicarr74 Well-Known Member

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    The sad thing about endometriosis is it never goes away until we do not have any estrogen going through our bodies. I have stage 3 so it comes back about every 2 years, I am so excited to see if being pregnant will alleviate it, even if it is just for a little bit longer. Let me know how your appointment goes! My doctor flushed my tubes in January and said my eggs look great.
    It is very encouraging to know fellow endogirls have gotten pregnant :) I hope that everything is okay!!
     
  15. alicarr74

    alicarr74 Well-Known Member

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    Well I had been on the pill, then the shot because I was still breakthrough bleeding on the pill (mind you I wasn't even taking the sugar pill!). When I came off of the shot I had my period every other week, it was brutal. They put me back on a low dose bc to regulate it and it caused every side effect possible, at first I thought I was just going through a depressing stage, until I started to get shoulder pain (I thought I was having a stroke!), so I immediately stopped bc and I no longer had diarrhea, suicidal thoughts, chest pain, nothing! So they started me on clomid and it has successfully gotten me pregnant the first time, turned into a chemical, had to do provera to straighten my period back out, and now I have a regular 27 day cycle and ovulate on cd12.
    Will your doctor be monitoring you often when you get off of zoladex?
     
  16. BrandiCanucks

    BrandiCanucks Mommy of 4, WTT

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    Alicarr, with me, I had my tubes tied in 2011 about 6 weeks after I had my daughter, and the surgeon who tied them noted that there was no endometriosis seen. I've heard that having a baby can "reset" your system. It wasn't until recently that I started feeling the pain and heavier bleeding again. I hope that if my surgeon who did my reversal saw anything, he cleaned me out to give me the best chance.
     
  17. itsnowmyturn

    itsnowmyturn Well-Known Member

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    Nope no monitoring. I will be keeping it as normal as possible to start with. I will be occasionally temping and using opks. After the new year if I'm not ovulating I will be going to drs, if I'm ovulating but not pregnant Il start charting. If I'm not pregnant by march if I ovulate quickly Il go for blood tests to check hormones etc to make sure everything is all good
     
  18. stephj25

    stephj25 Well-Known Member

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    Hi ladies. I have endometriosis and want to share my story.
    I started getting really bad pains when I was 19, major when AF was here and then constant dull cramping every day of the month. The male doc that I saw wouldn't take me seriously and kept saying it's just period pains and kept trying to dose me up with painkillers that never worked.
    When I was 23, me and DH knew that something was really wrong so I went to see a female doc who referred me to have a laparoscopy. I was told after the op that I have severe endo around my ovaries. Docs told me I may not be able to get pregnant.
    We TTC for a couple of years before we were referred to the infertility clinic and was put on Clomid. I read a lot about endo in the space of a few months and went on a very strict diet (diet which doesn't involve alcohol, caffeine, dairy, wheat, red meat, eggs, sugar) after custting out these foods, I felt amazing, no pains whatsoever.
    after 6 months of trying on the diet and on clomid, I got pregnant with DD (who is now 17 months old).
    We are now trying for our second and I have gone back on the same diet and was put back on clomid on thurs. I am so excited.

    I would really recommed cutting out the above foods to anyone with endo. Don't get me wrong - it is difficult but well worth it in the end. xx
     
  19. itsnowmyturn

    itsnowmyturn Well-Known Member

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    Steph can I ask how u manage to get ur protein and calcium without those things in ur diet? I'm an incredibly fussy eater so would struggle without dairy and wheat and eggs, the rest I could live without. I when u say cut out sugar I'm assuming you mean adding sugar into anything as extra and avoiding high sugar items because eating things only with zero sugar in would be impossible.

    I have considered doing the 'endo diet' before but all evidence iv found show it both ways but the science shows no evidence for it so just figured its a whole lot of hassle for something that's not proven to work.

    I would worry that my diet would be very restricted and I wouldn't get all the stuff my body needs to be healthy.

    Also can I ask did u continue with it when pregnant or did u eat normally? Also did u continue with the diet when not TTC? Sorry for all the questions, I currently work in nutrition but can't really ask my coworkers (who are all dietitians) about this
     
  20. stephj25

    stephj25 Well-Known Member

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    Well, I ate a lot of tinned mackeral & green veg (mostly kale) after reading that they are 2 good sources of calcium. For protein I had a lot of nuts, lentils and beans with my meals. I substituted pasta for corn pasta and milk for rice milk (I didn't like any other kind).
    I only went on the diet for 6 months before I got pregnant, I then had to drink milk as I am a milk lover! I haven't had much endo pains since before I was pregnant so nenver had to go back on the diet. TBH it's proving difficult this time round - maybe I'm just not as committed because I already have a child now :shrug:
     

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