Re-Introduction! Lets DO it everybody!!!!

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SeasideOasis
SeasideOasis Posts: 1,057 Member
Hey Everyone! Summer here! :flowerforyou: I wanted to apologize in advance for being a terrible group creator and not staying active with everyone here looking for like minded support. As many of us know, the struggle with Endometriosis is never ending. When I went through some problems, shortly after creating this group, I had to take a step back and deal with physical issues.

However, I am back and kicking butt! I thought this would be a good time to introduce myself as well as give everyone else the chance to (re)introduce yourselves too!

My name is Summer. I'm 28 and have just recently moved from Cleveland, Ohio to San Diego, CA:glasses: . I was diagnosed, officially, with Endometriosis in January 2007. Since then I've had more experimental treatments than I care to remember and four surgeries. I feel very fortunate as it has been about three years since I've had any 'major' issues. I still have to self medicate time and again, but its few and far between.

The treatment that has worked so far for me this time around has been my Mirena IUD. I've had my second IUD put it just over a week ago.

Since moving to California (two months ago tomorrow), I've started getting physically fit at the gym and working on eating at home. I've go about 65-70 pounds to lose to get back to where I was pre-diagnosis. If I feel great and comfortable sooner than that, then I'll just jump into maintenance.

So how is everyone else doing? How can we support YOU in YOUR goals?

Please feel free to add me as your MFP friend, too!

Replies

  • archanajoyce
    archanajoyce Posts: 219 Member
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    Hi Summer!

    My name is Archana (Archu to my friends). I’m 29 (well for a few more months anyway). This is my third day on this website and is gonna be my first day at the gym. The endometriosis diagnosis came 2 days back and well... now it is time to stop the excuses and wallowing in self pity and get moving 

    With a goal of losing over 100 pounds, this seems like a daunting task. But looking at all the inspiring people here, it seems possible and achievable.

    I look forward to and welcome inspiration and advice from you all.

    Hugs and Cheers,

    Archu
  • SeasideOasis
    SeasideOasis Posts: 1,057 Member
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    Hi, Archu!!

    Thanks for sharing your story! Good luck at the gym! Don't forget to push yourself, but remember your limits as you swing back into things. I've been known to do too much core and pay for it later :sad: :laugh:

    I have a higher weight loss goal too, so let me know if you need extra support, advice, or just general chatting!!

    Hugs,

    Summer
  • archanajoyce
    archanajoyce Posts: 219 Member
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    Hello again!

    It is so nice to be in a forum where you can talk about something and people actually understand what it is about.

    My endometrial layer is about 26.6mm thick which is pretty big. So the doctor has put me on Primolut three times a day. This is supposed to stop bleeding and help the layer thin out. However, once I started the gym the bleeding is back and with severe cramps as well. So the doctor advised me to increase Primolut to 2 in the morning one at lunch and 2 at night for a couple of days and see if the bleeding stops. So I skipped gym yesterday and hoping that all goes well by end of today.

    Otherwise D&C is the option. For that I have to fly home to India (I live in UAE and they do not perform this here, lots of red tape)

    I'm praying that it just responds to medication. Please keep me in your prayers as I really don't want Option B.

    Cheers!

    Archu
  • lequirk
    lequirk Posts: 4 Member
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    Hello!

    I am brand new to the endometriosis world - just had my first lap and official diagnosis two weeks ago. I am on the mend from surgery and beginning to adopt the endo diet and exercise more regularly. I have about 30 pounds to lose, but more than anything, I'd just like to feel decent again!

    I am looking forward to the next phase in life and getting to know people in similar situations.

    Take care all.
  • N1shka
    N1shka Posts: 4 Member
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    HinThere!

    I live in Toronto, and have done my entire life.

    My endo diagnosis became official two weeks ago, but I had been suffering for about 5 years. Kinds had a hard time finding a doctor to take me seriously, but once I did, she referred me to a specialist who has been fantastic. I actually have a duel diagnosis of endometriosis and adenomyosis, so my pain has been mighty!

    I have been taking progesterone pills for about three months, but I have decided to go ahead and get the Mirena too. Hopefully I'll be feelng much better for the next five years.

    Thanks for taking the initiative for the reintroductions. This is just an introduction for me though.

    Cheers!
  • suzfimbres
    suzfimbres Posts: 36 Member
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    Hey Everyone! Summer here! :flowerforyou: I wanted to apologize in advance for being a terrible group creator and not staying active with everyone here looking for like minded support. As many of us know, the struggle with Endometriosis is never ending. When I went through some problems, shortly after creating this group, I had to take a step back and deal with physical issues.

    However, I am back and kicking butt! I thought this would be a good time to introduce myself as well as give everyone else the chance to (re)introduce yourselves too!

    My name is Summer. I'm 28 and have just recently moved from Cleveland, Ohio to San Diego, CA:glasses: . I was diagnosed, officially, with Endometriosis in January 2007. Since then I've had more experimental treatments than I care to remember and four surgeries. I feel very fortunate as it has been about three years since I've had any 'major' issues. I still have to self medicate time and again, but its few and far between.

    The treatment that has worked so far for me this time around has been my Mirena IUD. I've had my second IUD put it just over a week ago.

    Since moving to California (two months ago tomorrow), I've started getting physically fit at the gym and working on eating at home. I've go about 65-70 pounds to lose to get back to where I was pre-diagnosis. If I feel great and comfortable sooner than that, then I'll just jump into maintenance.

    So how is everyone else doing? How can we support YOU in YOUR goals?

    Please feel free to add me as your MFP friend, too!

    I'm 30 and just barely got my official diagnosis, but I've been dealing with endometriosis as far back as I can remember. Back when I was in high school my doctors said I didn't have it but they couldn't figure out any way to relieve my horrible symptoms other than putting me on depo provera. So basically they slapped a band-aid on it and called it good. I'm thankful for better insurance and better doctors now, because I just had my first surgery a few days ago. Apparently it took twice as long as anticipated because there was so much endometriosis, in addition to a very large endometrioma (cyst) on my ovary. And some complications, but everything turned out okay in the end.

    Now I'm trying to figure out where that leaves me! I want to lose 20-40 lbs, eventually, but with all my health issues I know that is going to be a very slow process. I also just got diagnosed with Hashimoto's disease, so I'm striking out into new territory with my dietary needs. It appears I'll be trying a gluten free, dairy free, and soy free diet... It'll definitely be an adjustment!

    I'm living in San Diego also, so maybe we can have a little local meet-up or something sometime. It might be fun to get together sometime. :)
  • LearnFromTheRed
    LearnFromTheRed Posts: 294 Member
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    Hi everyone,

    I don't think I've ever introduced myself but I have Stage 1 endometriosis mixed up with hemiplegic migraines. Both are miserable conditions and the only thing I've ever found helped was being put into artificial menopause. My GP is trying to find someone who is willing to take the risk of doing it for longer as virtually every symptom goes - it was like someone had introduced me to my life for the first time!

    I will confess to going through a rough time of it at the moment and lacking motivation - I lost 18lbs whilst on Prostap and started running 5-10km for fun, but have lost it a LOT. It would be great to have some support/motivation - maybe accountability (!!)?

    Look forward to chatting with you all.
  • SeasideOasis
    SeasideOasis Posts: 1,057 Member
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    Hello!

    I am brand new to the endometriosis world - just had my first lap and official diagnosis two weeks ago. I am on the mend from surgery and beginning to adopt the endo diet and exercise more regularly. I have about 30 pounds to lose, but more than anything, I'd just like to feel decent again!

    I am looking forward to the next phase in life and getting to know people in similar situations.

    Take care all.

    Hello lequirk!

    Welcome to the Group (even though I wish you weren't diagnosed!!).

    Everyone in the group is a blast and feel free to ask a million and one questions. When I was first diagnosed, I had nowhere to turn, but here you will have many friends who have probably covered most treatments across the board!

    It won't be easy, but keep up the good work. Weight loss and a healthy body has helped me, I hope you will find the same!

    Summer
  • SeasideOasis
    SeasideOasis Posts: 1,057 Member
    Options
    HinThere!

    I live in Toronto, and have done my entire life.

    My endo diagnosis became official two weeks ago, but I had been suffering for about 5 years. Kinds had a hard time finding a doctor to take me seriously, but once I did, she referred me to a specialist who has been fantastic. I actually have a duel diagnosis of endometriosis and adenomyosis, so my pain has been mighty!

    I have been taking progesterone pills for about three months, but I have decided to go ahead and get the Mirena too. Hopefully I'll be feelng much better for the next five years.

    Thanks for taking the initiative for the reintroductions. This is just an introduction for me though.

    Cheers!

    Hello There, N1shra!

    Sorry to hear about your diagnosis, but so excited you found a doctor who has taken you seriously and helped you find the best way to treat you, for you.

    I am on my second round of Mirena! The first couple months were rough, but I swear by it. I still have to self medicate here and there, but it is MUCH less than before. I've only needed one surgey in that time too!

    Good luck! Keep us updated on your progress!!

    Summer
  • SeasideOasis
    SeasideOasis Posts: 1,057 Member
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    I'm 30 and just barely got my official diagnosis, but I've been dealing with endometriosis as far back as I can remember. Back when I was in high school my doctors said I didn't have it but they couldn't figure out any way to relieve my horrible symptoms other than putting me on depo provera. So basically they slapped a band-aid on it and called it good. I'm thankful for better insurance and better doctors now, because I just had my first surgery a few days ago. Apparently it took twice as long as anticipated because there was so much endometriosis, in addition to a very large endometrioma (cyst) on my ovary. And some complications, but everything turned out okay in the end.

    Now I'm trying to figure out where that leaves me! I want to lose 20-40 lbs, eventually, but with all my health issues I know that is going to be a very slow process. I also just got diagnosed with Hashimoto's disease, so I'm striking out into new territory with my dietary needs. It appears I'll be trying a gluten free, dairy free, and soy free diet... It'll definitely be an adjustment!

    I'm living in San Diego also, so maybe we can have a little local meet-up or something sometime. It might be fun to get together sometime. :)

    Thanks for the friend request!

    The depo shots were the worst! :mad: When my endo came back, I swear it came with a vengence. I hope you find some relief with your recent surgey. Did they put you on anything right away or seeing how you do after surgey?

    I would "love" to meet up with some SD folks!! Maybe an awesome park walk or even meeting up for lunch (OR BOTH!).
  • suzfimbres
    suzfimbres Posts: 36 Member
    Options

    I'm 30 and just barely got my official diagnosis, but I've been dealing with endometriosis as far back as I can remember. Back when I was in high school my doctors said I didn't have it but they couldn't figure out any way to relieve my horrible symptoms other than putting me on depo provera. So basically they slapped a band-aid on it and called it good. I'm thankful for better insurance and better doctors now, because I just had my first surgery a few days ago. Apparently it took twice as long as anticipated because there was so much endometriosis, in addition to a very large endometrioma (cyst) on my ovary. And some complications, but everything turned out okay in the end.

    Now I'm trying to figure out where that leaves me! I want to lose 20-40 lbs, eventually, but with all my health issues I know that is going to be a very slow process. I also just got diagnosed with Hashimoto's disease, so I'm striking out into new territory with my dietary needs. It appears I'll be trying a gluten free, dairy free, and soy free diet... It'll definitely be an adjustment!

    I'm living in San Diego also, so maybe we can have a little local meet-up or something sometime. It might be fun to get together sometime. :)

    Thanks for the friend request!

    The depo shots were the worst! :mad: When my endo came back, I swear it came with a vengence. I hope you find some relief with your recent surgey. Did they put you on anything right away or seeing how you do after surgey?

    I would "love" to meet up with some SD folks!! Maybe an awesome park walk or even meeting up for lunch (OR BOTH!).

    Yeah, they put me on depo provera again, just because I already know how my body reacts to it and because I know it prevented all endo symptoms in the past. It definitely sucks, because I gained a ton of weight on it last time. :( And I also have Hashimoto's thyroiditis (autoimmune thyroid disorder), so that will make weight loss even more difficult. Recovery from the lap is kind of slow going, but I'm looking forward to my post-op appointment to see the pictures and learn more about how the surgery went. Yes, let's definitely meet up once I'm all healed! :)
  • archanajoyce
    archanajoyce Posts: 219 Member
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    Please pray for me folks... I'll be meeting the OBGYN tomorrow.

    Most probably she will advice D&C because the Primolut has not stopped heavy bleeding. It has been going on for over 40 days now. I've never been anaemic and don't wish to start now.

    We live in UAE and D&C is not done here. It is not legal under the Muslim Law.

    If she advices D&C, then I'll be flying home to India. I just want to stop bleeding heavily, constantly checking, running to the bathroom, feeling dizzy... If I walk as much as 15 minutes on a treadmill or lift 2 kg, I'll have to sit on the toilet for 10 minutes bleeding, head reeling and with stomach cramps.

    Honestly, I wish she would ask me to do a D&C and get it over with. More than 40 days... Never again. I swear to loose weight and beat this viscious cycle. Just let it stop...
  • SeasideOasis
    SeasideOasis Posts: 1,057 Member
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    How did you doctors visit go?
  • bethfartman
    bethfartman Posts: 363 Member
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    HI Everyone!

    I'm in San Diego too, born and raised :-)

    I was diagnosed with endometriosis back in my early 20's- I'm now 29. I've had two emergency surgeries from complications due to endometriosis, 1 because of a tear in my appendix and another to remove a very large ovarian endometrioma (those jerks ended up taking my whole ovary). I was diagnosed via biopsy from my last surgery, but I've never had a good exploratory surgery with an experienced OB surgeon, so I don't know the full extent of my endometriosis. However, my doctors suspect that I'm likely stage IV.

    I can't be on any sort of hormonal medication due to severe migraines and the increased incidence for women w/ migraines to have strokes on hormonal bc. I went to a pelvic physical therapist for a while, which didn't really do much to relieve my symptoms. I'm currently going to acupuncture on my high pain days, but I've yet to determine if that helps at all. I decided about a week ago to start an 'endometriosis diet' since it's been suggested by many doctors and PT's over the years. I'm in the process of eliminating soy, dairy, red meat, gluten, added sugar, and caffeine from my diet (I can't in good conscious waste food I bought before I made this decision, so once that's gone, I'm all in.) In addition, I'll eat primarily organic/hormone free. I also bought the book 'Endometriosis: The Key to Healing Through Nutrition.' I'm about 30 pages in and loving it! Highly recommend.

    http://www.amazon.com/Endometriosis-Key-Healing-Through-Nutrition/dp/0007133103/ref=sr_1_1/185-6471196-9845660?ie=UTF8&qid=1401987326&sr=8-1&keywords=endometriosis+books

    I've decided to take my treatment into my own hands, I'm sick of doctors just throwing stronger and strong pain meds at me (up to oxy's now, which I take sparingly.) I also want to do whatever I can to preserve my fertility. Weight loss and regular strenuous exercise has done wonders to improve my symptoms so far. I gained about 80 pounds after my first surgery and I have about 30 to go before I'm back to my goal weight. If anything, weight loss has vastly improved my outlook on life and made me feel like a vivacious, beautiful woman again.

    I understand the struggle we all have in common. I commend all of you strong, informed, intelligent women for taking an interest in your health and reaching out to others for community support- more women need to buck the shame and make their pain known, that's the only way the medical community and world community at large will begin to empathize and recognize this disease for what it is, rather than brushing it off as hysterical womanly 'troubles.' When I hear how some women are disregarded by their doctors it makes me furious!

    Sometimes it's nice to know we're not alone, even when you feel isolated and in pain.
  • saradanette
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    Hi Everyone,

    I am new to myfitnesspal and this group. Glad that this group exists! I joined myfitnesspal because I have gained 30 pounds since my last lap surgery. I find that it is almost impossible to lose weight for me now.

    I am 30 years old and have severe endo. I have an endometrioma on my only ovary that has been removed once and is growing back with a vengeance. I have had four surgeries and it comes back quicker and more intense. Last surgery I was at a Level III in two years.

    Since the pain has been so bad it has been hard to exercise and even cook food. I have a total hysterectomy scheduled for June 30 and nervous about gaining even more weight.

    Still trying to pinpoint what foods/drinks make it flare up. I think sugar, carbonated soda etc and coffee. Does anyone have any suggestions for what to avoid? I am vegetarian but eat fish.

    Also, any recommendations for post-surgery exercise routine? I am having it da Vinci.

    Thanks,
    Sara
  • jetgraham
    jetgraham Posts: 2
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    Hi everyone, I've just joined the group so thought I'd introduce myself :-) I am 29 and live in the UK, I was diagnosed with endometriosis in July 2012 after many, many years of pain and suffering. I had major surgery in September last year to excise endo from all over my pelvis, bowel etc. which took a long time to recover from. I put on around 14lbs after the surgery due to being off work and totally inactive for almost 2 months! I've now lost most of the weight I gained. I am a lot better than I was before the surgery, but I still have endo flare ups and symptoms. Looking forward to chatting with you all.
  • archanajoyce
    archanajoyce Posts: 219 Member
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    It's good to be back! I flew to India immediately. Straight from the airport to the emergency room where D&C was performed. I was severely bleeding and even after D&C, it didn't stop. So, They waited five days and performed an ultrasound guided D&C. Bleeding still hadn't stopped. However now, I'm on Novalon and Mertformin regulating my periods. I've lost a few pounds and am feeling great! :)

    A big thank you to all the lovely ladies here for the support :)
  • Finkerbell
    Finkerbell Posts: 154 Member
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    Hey Everyone. I recently joined the group. My name is Kat. I was diagnosed in 2008. I have been on Lupron, and also had a laparoscopy. In 2012 I had my daughter - being pregnant and up until a couple months after my cycle started is the best I've ever felt. Now I'm back to having all my symptoms again. I'm having a hard time keeping all the weight I had lost off.
  • Iolamusica
    Iolamusica Posts: 2 Member
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    Hello everybody! I'm posting a recent pic of my endo belly after walking over 6km through the day and eating one california sushi roll for dinner plus 2 glasses of water. I am a nurses assistant and on my feet most of the day and yet . . .this is my reward. Cannot wear jeans at all. I weigh 155lbs, 5,2, and have 30% body fat. Not concerned with weight so much as getting rid of fat. As if that isn't enough I have something called oral allergy syndrome. If I eat a raw apple/peach/pear my body thinks it is eating birch pollen and mimics anaphylaxis! That means cooking all the nutrition out of everything and spending more time slaving away in the kitchen.

    I have had 2 laps, stage 4 endometriosis. Almost 30yrs old, no children.
  • lonniebosenko
    lonniebosenko Posts: 5 Member
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    Hello Ladies!

    I have had endo for about 10 years but was officially diagnosed in 2010 with my first surgery. I'm 35 and I am a single mom of a soon to be 13 year old boy (yikes and he's already taller then me). After having an official diagnosis I did my own research and shrugged off my doctors. I've been mostly successful with controlling my pain through diet with only pain meds when it flares up too much. But it's time to get my weight back down and feeling good about myself. We can do it together!