Looking for other Women living with Endometriosis and trying to lose weight.

Hi everyone my name is Patrice. I am 27 years old, and just recently started my weight loss journey a little shy of a month ago. I wanted to reach out to other women who are living with Endometriosis. In September of last year I was diagnosed with stage 4 endometriosis. It has made my life an absolute hell to say the least. All the medications and surgeries have just been so daunting. I decided to start eating better, and working out to see if that would at least have some sort of positive effect on my fighting my endometriosis.

For those of you who are unfamiliar with Endo or (endometriosis), it is the development of uterine-lining tissue outside the uterus. Symptoms may include abdominal pain, heavy periods, and infertility. Treatment options include pain relievers, hormones, and surgery. In the past 9 months I've had to very invasive surgeries to try and combat this disease. I should also mention that there is NO cure for endometriosis. You are pretty much stuck living with this pain until you are told its gone too far and are forced to have a full hysterectomy. It's disease that causes so much physical and mental pain. The thought of knowing you may never be able to reproduce and then the constant surgeries, hormone therapy treatments, and just the typical day to day endo pain.

So now that I've given a little background on my personal situation with endo, and what it is, I'm asking if anyone out there has this crippling disease as well, and is trying to lose weight and exercise. I have days where the pain is so unbearable that there is no physically possible way for me to be able to go workout. I'm literally stuck on the couch doubled over in pain, until I break down and take my pain meds, that typically cause me to fall asleep. I wake up hours later only to realize I've slept the day away, the pain meds have worn off, and I'm back to having sever pain again. I feel as if I have tried everything. I've changed my diet, been working out and nothing seems to work.

If any women out there have any helpful hints or idea's on how to stay active and fit while living with this brutal disease please let me know and share your story with me. It would be beyond greatly appreciated.

Thanks in advance,



  • mountiesgirl
    mountiesgirl Posts: 41 Member
    Hi I was recently diagnosed with endometriosis I will be glad to be your friend and supporter on your journey
  • lithezebra
    lithezebra Posts: 3,671 Member
    You poor thing. My heart goes out to you. All the diets that I tried had no effect on my endo. It's no fun. I was lucky that being on the pill worked well for me, for a long time. Exercise actually helped me with pain, but pain can be drastically different for different people. I had more problems with pain and sleeping, and God help me when I had to cough or sneeze. Eventually, I had a hysterectomy, including the ovaries.

    I hope that you are able to do the things that you want to do in life.
  • nekosimba
    nekosimba Posts: 239 Member
    My husband and I have been TTC for the past 3 years and just recently my doctor has referred me to an OB. I have surgery in 3 weeks to officially diagnose me with endo and hopefully clean everything up in order to help us conceive.

    I've been really struggling with my weight, being motivated, and staying accountable. I've just been so ridiculously tired and sore all the time...and nevermind the stress from work.
  • Chelseaknowles7
    Chelseaknowles7 Posts: 1 Member
    Hi Patrice, I have been living with endo for 11 years now and I have gone through surgeries, doctor induced menopause, every type of birth control possible. I had an IUD placed about 5 years ago, had it removed 1 1/2 years ago to help me to lose weight and it worked! 20lbs down, but my diet now is solely based on controlling my endo pain. Happy to say I've been off of pain medications for 2 months and managing pain through healthy and specific diet choices including exercise.
  • 6985250
    6985250 Posts: 1 Member
    Hi. I was diagnosed at 15 with endometriosis. I am now 38. At the time doc did a laparoscopy which found a bunch of lesions attaching all my organs to each other. Once i healed from that i felt better, for a short time. Then the medically induced menopause (at 17). That was horrid, but helpful. Then several rounds of birth control. Despite being told i was probably sterile, I do have one child. I believe the menopause combine with birth control immediately after did the best in controlling my symptoms. Since pregnancy, I have pretty much stuck with an IUD and my endo symptoms haven't been as bad - until this year. Now, i feel like i did 20 years ago. Except, the difference is that i can push for a hysterectomy now where i couldn't before. Not sure I have the doc convinced yet, but it is still early in the journey yet. I am a single mom and I am tired. My goal, and the reason why I use MFP is not to gain weight. Which we all know when we are stressed and tired gaining is really easy to do. So, Patrice and the other ladies in this thread, here is what I can tell you. Embrace the good days. Don't give up. If your doctor won't help you, find one who will. There are several treatment options out there so find the one that works for you.
  • JustSomeEm
    JustSomeEm Posts: 20,095 MFP Moderator
    edited July 2016
    I have endometriosis. For a long time, it made movement during both ovulation and my period incredibly painful. I used it as an excuse to sit around and eat all the things, while not doing much exercise. I eventually hit 200 pounds, and decided enough was enough. At first, I focused only on my diet - I didn't care about nutrition, only the number of calories I was eating. Eventually, I began making more nutritious choices out of 'self-defense', because nutritious foods are usually less calories than chips and cookies. :) As I lost weight, the pain eased. As I started making more nutritious food choices, the pain eased a bit more. Eventually, the pain eased enough that I started a running program (C25K). For the past 3 years, I've been logging here. For the past 2, I've been a runner (getting ready to head out for an 8 mile run in a minute). NOW, I weigh 130 pounds, and have been that way for the last 2 years. The endo is still there, but it is MUCH less painful thanks to a better diet and exercise. I have months where things seem almost normal (whatever that is), but there are also months where I hurt. Something I've noticed - when my diet starts getting bad, the pain is worse. And when I've been slacking off on the exercise the pain is worse.

    My point is that there are medical treatment options, but you have *some* control over how you feel as well. For me, the endo pain is much less if I'm taking care of my body.

    Edited to add: OP - if working out hurts, try just focusing on calories for now. Also, walking is a great, low-impact exercise that (believe it or not) will help with the pain. It sucks when you first get started, but after a few minutes of walking, you'll feel better.
  • e9196tep
    e9196tep Posts: 57 Member
    DX when I was 30. Surgeries and hormones failed. They have you pain meds!? Me.....only ibuprofen. I managed by Gods grace to have 2 wonderful children. Third was out of the question do to advance disease. At 35 a hysterectomy. I kept my cervix. Bad idea. Fast forward June 2016 at age 50 had surgery to remove suspicious mass. While I'm there my onocologist found more endo and adhesions. I do want to tell you gals to keep aware of any changes to your body. Around age 40 my thyroid became hypo. Age 43 began suffering strange pain and sensations. Age 48 DX rheumatoid arthritis. There is potentially a link between endo and other autoimmune diseases. I wish I had advice to help you but other than placing frozen peas on your tummy and massage I didn't have a clue. I just felt like I was going insane. Periods may be uncomfortable but never should you have severe pain, vomiting , diarrhea. If your doctor doesn't believe you get a new one. There is hope to save your fertility and your sanity. God bless!
  • nezza_93
    nezza_93 Posts: 7 Member
    I was just diagnosed last year although I'm sure I've been dealing with it since 13, I just thought periods were supposed to be that way..... until I found a doctor who knew better. I also have mixed connective tissue disease which has only made everything worse. I am really glad to find this post because I've been feeling very alone lately and they're both invisible so....yeah. I hate to hear that other people have this though because it's just terrible.
  • aglfpgh
    aglfpgh Posts: 1 Member
    I've just recently resumed my MFP use and in searching for folks with my history/struggles I found your post. This is me. When diagnosed it was due to ruptured endometrioma with emergency surgery. While we were all relieved it was not cancer, my Surgeon and my RE both said to me, you're stage IV but that's b/c we don't classify above, so I completely understand.

    I was ignoring with pain for years much like nezza_93 thinking "periods are supposed to suck". The severity of my adhesions were kinda ridiculous.

    Of course, much of this is also affecting my IF situation so my goals with getting back on the MFP wagon are to keep myself motivated to be healthier for a multitude of reasons: more likely success with IVF and/or FET depending on how things go as well as to hopefully manage the pain and control this disease.

    My biggest psychological challenge is forgiving myself for ignoring my symptoms for so many years. That may be the hardest and quite frankly have the biggest impact on my emotional eating. So here I go.

    If this sounds like you, please reach out & friend me. :smiley: