Looking for friends with endometriosis, interstitial cystitis, PCOS, etc.

papetto
papetto Posts: 46 Member
edited November 13 in Introduce Yourself
Hi!

I've been getting more serious about using this app and was hoping to make friends with anyone out there who has condition(s) like endometriosis, interstitial cystitis, pelvic floor disorder or PID, PCOS, or fibromyalgia (or anything similar).

About me: I'm 25, female and have chronic pain from endometriosis & coinciding health issues. I've had chronic pain for about three years and this is the first time I've tried to take my workouts seriously since being diagnosed. I've been trying to hit the gym 5-7x's a week and am pretty strict about my diet. I would love to know that there's someone else going through the same health obstacles while working toward their fitness goals.

Thanks for reading and if you are suffering with chronic pain, I hope that we can lift each other's spirits. <3

Replies

  • kazredhead
    kazredhead Posts: 13 Member
    Hi, I am a fellow Endo sufferer. I was diagnosed about 25 years ago after a large number of laparoscopies. Drs then didn't seem to understand much about it. I am, however, totally pain free and have Depo Provera injections every 11 weeks. The downside is, of course, that they are steroids and I have gained quite a bit of weight (2 stone) though I suspect a bit too much wine and unhealthy food is also quite a contributor, as well as a sedentary office job. So at the age of 50 I am doing a Couch to 5K running programme and using MFP to monitor intake.

    Happy to join you for this ride! :-)
  • TehLaughingDog
    TehLaughingDog Posts: 200 Member
    Hello! I'm a 24 year old (soon to be 25) PCOS sufferer and also am going for a formal diagnostic for Ehlers-Danlos which is giving me a lot of joint issues/pain. My PCOS screwed me this summer with a heavy period lasting 3 months and some really nasty cysts. So now I'm on medication for it and I've slowly been losing weight.

    Anyways, I'm trying to have fun doing this and not take it all too seriously since that is really discouraging to me. I'm a student so there is enough life stress there haha. I'm really into outdoor recreational activities but will be hitting the gym this week after some new compression sleeves come in to help stabilize my joints.

    I'll send a request and feel free to add!
  • chrysalis2015
    chrysalis2015 Posts: 212 Member
    Hello - 40, PCOS, but on the other side as I had a hysterectomy (uterine cancer) and a left ovary removal due to cysts, and had a ton of adhesions removed along with suspected endo tissue. As far as pain, I have rheumatoid arthritis, lupus, and a host of old injuries from when I used to dance, so pain is a constant companion I've learned to work around (icy hot TENS unit is a gift from GOD!!). Also hypothyroid...yeah, I'm a mess :)

    Feel free to add me. I've finally been able to start trimming down. I tried to lose weight before by just cutting the calories and was a mess. Now I've added heavy lifting (well at least for me) and have finally been trimming down and have lost some sizes since I got cleared from surgery in mid-July.

    :)
  • ericapatoka
    ericapatoka Posts: 2 Member
    Hi! 32 years old now, got diagnosed with IC at the senseless age of 25 when I was in grad school becoming a nurse practitioner. They put me on 12 meds at first to get symptoms under control, and after a 7year journey of non-stop experimentation w/ exercise regimens, yoga, clean paleo diet, and acupuncture, I have gotten down to 5-6 meds, which is awesome, and for the most part, I feel almost normal! I had an almost fatal case of EBV mono when I was 22, and after that, all the autoimmune problems started- I was constantly sick, fatigued, got IC as noted above, my urogyn says it is 90%+ likely I have endometriosis too (IC and Endo typically co-occur) and the beginnings of fibro if I let stress/controllable variables slide. Long story short, even on the 5-6 meds I remain on, Whole30, and thereafter, a strict paleo (mostly low-acidity too!) diet and exercise regimen has really helped me to feel like I have some control over this, and overall, I have much more energy on a paleo diet with goal of 60% healthy fats/30% good quality carbs/and 15% protein intake per day. I will likely stick lifelong to this framework of a diet, and still experiment with a mix of yoga/cardio/strength training/calisthenics to see how much better I can heal myself!! Feel free to friend me!
  • ronjsteele1
    ronjsteele1 Posts: 1,064 Member
    I'm 46. I have PCOS and IC. I manage both as naturally as possible with diet, exercise, targeted supplements, and natural therapies. Although PCOS has been a factor in weight gain/loss, for my body, strict CICO still works. My issue is discipline.....
  • IrinaOlives
    IrinaOlives Posts: 1 Member
    Hello girls! I'm 33 and I have endometriosis since.... I can't remember but the diagnosis was last february. I have two cysts and I take the contraceptive pill to avoid the ovulations and the enlargment of the cysts. I use MFP to control my diet and I do some exercice 3 times a week to loose weight because I have out on weight a little bit recently (due to contraceptive pills I guess). Feel free to add me!!
  • potbelly06
    potbelly06 Posts: 2 Member
    Hi everyone! I am probably the youngest here (20). I was diagnosed with PCOS when I was 16 and that was the time when I gained weight rapidly and also suffered from acne vulguris not to mention nightmarish menstruation bleeding and cramps. I have been on treatment since and while I haven't gained extra weight since then, I haven't lost weight either. Hence why I am here. I am still overweight even if I am not gaining and with a family history of diabetes I really want lose weight soon. Hope to talk to you more soon. Maybe talking might help us motivate each other!
  • turtle_jamie_05
    turtle_jamie_05 Posts: 1 Member
    Hi! I was diagnosed with PCOS, Endometriosis, IBS, and with diagnosis of exclusion for fibromyalgia, and also possibly pelvic congestion and IC. I have been gaining weight over the years due to pain, hormones, etc. My friend recommended this app and I hope it helps me. My doctor wants me to start a weight loss pill and I absolutely do not want to take it. My blood pressure and lipids are rising as well. I want to better my lifestyle and hope to keep it healthy naturally. Good luck to all of you!
  • rosaliemathie
    rosaliemathie Posts: 1 Member
    Hi I am just returning to fitnesspal after 2nd pregnancy - have had endo and PCOS since age 15, and hormonal induced IBS - 6 operations later and 2 kids later (one nearly 1 and other 3.5yrs) I am now trying the Mirena coil to keep the endo at bay (seemed to return with vengeance after stopping breastfeeding 1st child) this time round they suggested mirena before periods returned... I really want to be fit and as healthy as possible, I hope this will help me keep track of what I eat and inspire me to exercise more and ideally loose 10 kilos in the end! I didn't even think of it for a place to share advice for hormone related issues, I would love to share recipe ideas as I am definitely eating too many carbs and not enough protein...??? When I was 18 I went on the candida diet to help with the endo, it worked but his time round I am not sure I could cope with no fruit, sugar or coffee and 2 small children! Good luck everyone! :)
  • The_Original_Beauty
    The_Original_Beauty Posts: 162 Member
    I have fibromyalgia and pcos, the pain every day is exhausting i am currently on lyrica twice a day. I am following the 16/8 lifestyle for the pcos
  • stef_potts
    stef_potts Posts: 7 Member
    Add me as a friend please, I've got pcos and am just starting. I have no idea how to add friends on here yet lol thanks
  • Nicole_kayy
    Nicole_kayy Posts: 88 Member
    Hello, I have pcos. I sent you a request. Let's all do this together!
  • sunmaid_1985
    sunmaid_1985 Posts: 5 Member
    Hi- PCOS and very overweight. Looking to lose some pounds and hopefully get pregnant soon. Please add, need all the help and support I can get
  • Dana__Chami
    Dana__Chami Posts: 2 Member
    Hello im recently diagnosed need help as well :( what did your dr recommend?
  • AshleyCruz521
    AshleyCruz521 Posts: 1 Member
    PCOS, Endo, and possibly IC here also. Seems like nothing works for me to lose weight, and I want to lose a lot of it. Looking for friends in my boat. :/
  • sweetpea7292
    sweetpea7292 Posts: 10 Member
    I am 25 have pcos and I am so ready to have babies. I have to get healthy if I want to make that happen and I could use some support from people in the same boat. Thanks!
  • Lift_Run_Eat
    Lift_Run_Eat Posts: 986 Member
    Feel free to add me.
    No named diagnosis, but I have had lots of reproductive organ problems....
    at 17 I had my right ovary and a 22 lb ovarian cyst removed.
    a few years back, I had polyps removed from my ovary
    Cysts that form on my left ovary monthly.
    Severely painful ovulation almost every month.
    Cysts on my breasts.

    I have lost and kept off 45 lbs so far this year.
  • RaeBeeBaby
    RaeBeeBaby Posts: 4,246 Member
    Hi all! At 57, I'm older than a lot of you but have a history of PCOS and IC. I believe I had PCOS before it was a "thing". I had seriously painful and frequent periods (every 2-3 weeks) and sometimes ovarian pain that would put me in bed for days. After an ultrasound in my mid-30's showed visible cysts in both ovaries my (very OLD) ob-gyn doc told me "all women have ovarian cysts - they shouldn't cause you pain"! SO, thinking I was just a woosy, I lived with all the awful symptoms and pain until menopause a few years ago. Even after menopause I was still having abdominal pain so I had a complete hysterectomy. Unfortunately, post hysterectomy I developed a terrible UTI which led to IC. After months of pain, many doctor visits and being on multiple medications I got sick and tired of it all. I started researching natural remedies for IC and have found some things that work for me. It still flares up from time to time, but it's WAY better than it used to be. I'm no longer on any prescription medication at all.

    Having a good diet, regular exercise and my natural remedies has helped me tremendously!
  • sonal_sinha
    sonal_sinha Posts: 1 Member
    Hey there, was diagnosed with PCOD 5 months ago. Was suffering from 2 years but doctors didn't recognized it as its so rare. Now working on it to get well.
    Hope for the best.
    All the best everyone :)
  • ambitiousclaire
    ambitiousclaire Posts: 72 Member
    Hi Everyone,

    I've had PCOS for about 10+ years. I've struggled with all of the symptoms that comes with it.

    This year, I have lost 50 lbs and I was able to get pregnant this year after years of no luck.

    I still struggle with PCOS but I will no longer let PCOS live my life for me. I love meeting new people, feel free to add me!
  • Timetogetstarted
    Timetogetstarted Posts: 14 Member
    I'm 37 and I was diagnosed with endometriosis 9 years ago after having a lump removed. I know this sounds weird, but it's nice to 'meet' other people who have gone through similar experiences. Most people just look at me blankly or think I've made it up when I mention endo.
  • purplicious86
    purplicious86 Posts: 43 Member
    I'm 31 and I have IC, OAB, and PFD. It's not easy doing the weight loss thing AND dealing with that on top of it! I'm "happy" to see a thread about it because I'd love friends who understand. But not happy because you guys are dealing with this too. I was on here for years, lost a lot of weight. Then all these health issues popped up and really ran my life last January. I took a year off to really try and deal and have gained some weight back I need to lose. Feel free to add me!
  • misssararae
    misssararae Posts: 23 Member
    edited January 2018
    I don't think it sounds weird Timetogetsta... I searched for endometriosis here to find people. So, hi :)

    After 5 years of TTC by "chance" we finally did only to find out the pregnancy was ectopic and I needed emergency surgery since it had ruptured. During the lap surgery to remove the ectopic pregnancy they found that I was covered in endo scaring and my organs were unrecognizable. It really really REALLY explained a lot of the health issues I was having that I kept getting a "sounds like you're depressed" diagnosis from.

    So, while I lost the baby I learned a lot more about my health and myself.
  • michsax14
    michsax14 Posts: 22 Member
    I’m 30, have PCOS, and have yet to have a successful pregnancy. Will be adding you ladies!
  • deeblues13
    deeblues13 Posts: 84 Member
    I also have pcos and have had 2 kids the first concieved naturally at my slimest and going gym everyday my 2nd after 3 months on metformin my periods have always been very irregular feel free to add me
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