Monday, July 22, 2019
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When The Doctor Says It’s Endometriosis

Seven years ago, I remember sitting in my doctor’s office when I first heard her say, “I think you may have endometriosis.” At that point, I only knew two things about endo: 1) it has something to do with scar tissue and 2) it can cause infertility.

Surgery was scheduled for Sept. 17, 2003 it was confirmed that I had endometriosis. A month later I signed myself up to start Depot Lupron. My biggest mistake was not starting to research my disease until after I began a treatment that I knew nothing about.

So let my loss be your gain!  Here are three things that I have learned over the last seven years that I wish someone would have told me when I was diagnosed:

  1. Educate Yourself. Read books. Research online. While you cannot trust everything that you read on the internet, there are awesome resources out there! I completely regret not research Lupron before starting treatment as I know that if I had taken the time to do so, I would never have taken it and I know that I would be have been better off.
  2. Find Support. Thankfully this was something that didn’t take me too long to do!  Several months after getting diagnosed, I discovered the GirlTalk program through the Endometriosis Research Center and I am so glad that I did!  It has been such an amazing encouragement having a group of ladies that can truly say “I know how you feel.”  We have shared our stories, compared treatments, and given a word of hope. I cannot say where I would be had I not found support within such a community. Whether you find a support group in person or online, it is so essential to keeping a positive outlook when facing endometriosis (or any other chronic illness). Also, if you feel the need to see a counselor (or even an anti-depressant), do it!  Don’t feel as though seeing a counselor makes you “weak” or “crazy” when in fact it will make you stronger. This journey is long and difficult so build a support team to help you along the way!
  3. Become Your Own Advocate. You know your body better than anyone else. If you feel in your gut that something is wrong, then it probably is. Don’t let your doctor push you into a treatment that you don’t feel comfortable with. If you feel like something has been missed, speak up. If you feel like you are not being taken seriously, seek a second opinion. Even if you love your doctor but feel like you are out of options, still ask for a second opinion. I was lucky enough to have a wonderful doctor from the beginning and while I cannot say enough awesome things about her, we reached a point where we felt stuck so I asked for a second opinion. My doctor’s feelings were not hurt and in the end, I think we both benefited. In the end, you must stand up for yourself and most importantly, listen to yourself.

I hope this information can help you at any point in your journey with endometriosis!

Jamee

Read more about endometriosis and endometriosis stories.

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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22 comments

  1. Well. I was diagnosed with endometriosis June 20th of this year. I tried staying on birth control pills and started depo provera (sorry about spelling) 3 weeks ago. I am still learning so much about this disease and how to deal with everything. I appreciate everything you have offered as insight. And I am so glad i found this site.

  2. I found out that I had endometris the beginning of April this year and had my surgery on April 24. They had to remove my left ovary and tube. The Dr. Has me on the luporn shot. And i feel a lot better.
    Sorry for the spelling mistakes.

  3. It wasn’t until after a year and a half of trying to get pregnant and we started fertility treatments that I even had suspicions. I had always been on birth control, had bad lower back pain and slight digestive issues…but when fertility treatment started, it woke up the beast. Horrible periods and it was on my bowel so I was in daily misery, that was getting worse After my 2nd laparascopy – 2nd because the 1st dr did not know what it was cuz it looked so bad – (and now nearly 4 years of TTC) I was diagnosed with stage 4 endometriosis. My tubes and ovaries are fine (shocker!) so although they removed scar tissue I don’t even know if they “fixed” my fertility issue. We’re TTC again but may be stuck at square one… I haven’t had any endo treatments, I have only tried birth control to suppress it while my husband was deployed.

    • Fertility treatments can really speed the spreading of endometriosis because of the jacked up estrogen! I really hope removing the endo and scar tissue works for you and you get pg soon!

  4. First I would like to start off by saying I am a 7 year breast cancer survivor. In May of 2008 I had a right oophorectomy because of a large cyst on my ovary. About 6 months later I told my gyn that I was having really bad menstrual cramps, he told me to try Advil, at my annual exam I told him the cramps were worse, he again advise that I take Advil, maybe extra strength. In September of 2009 I started getting really sick, cramps, chest pains and just feeling really bad in general. I went to my family doctor, she set me up with some X-rays and put me on Nexuim for acid reflux. Still not feeling any better I returned to the doctors in November, was sent for a abdominal ultrasound. They discovered that my left kidney was twice the size it was supposed to be, went to see a specialist for that right away. I had a blockage in my left ureter. To make an already long story (sorry) shorter it was endometriosis. My gyn found it in May of 2008 and never told me about it. So, for over a year and a half and pain and sickness that could have been dealt with had I known what we were dealing with. I now have permanent kidney damage and had to have a complete hysterectomy this past April. I had stage 4 endometriosis. It was everywhere. It had my large intestine twisted, it was all over my bladder, it was on my right lung and I also had a lesion in my right shoulder. Things I had complained about and my gyn never mentioned anything, until I went to him and told him I could no longer deal with the pain that I thought was fibroid cysts in my uterus. Please ladies if something hurts and you don’t get an answer from your gyn, get a second, or even third opinion, until you are heard and treated. I am now 37 years old and going through menopause and still having kidney issues.

    • Endo had wrapped around my ureter too at my last surgery! My doctor said that had we not scheduled surgery, I would have wound up in surgery under emergency circumstances within weeks. Endo can be some scary stuff and it looks like it really traveled all over with you!

  5. Hi everyone. I started getting pains November 2009. I was admitted to hospital and after five days they decided to go in and take out my appendix. Of course my appendix was’nt the cause of my pain and after more visits to the hospital i finally was told it might be Endo. Im 17 and i had no clue what endometriosis was!!! I was put on the waiting list 15th of February 2010. I’m still waiting for my surgury and could be waiting another year. My endo is so bad i cannot attend school or even think about a part time job. I would really love to hear from others like me for support.

    Sorry for any spelling mistakes.

    • Oh sweetie! I am sorry that you are having to wait so long for surgery! That is crazy! The Fight Like a Girl Club has awesome resources but you may want to check out the GirlTalk program with the ERC. Its an online support group for ladies under 25 with endo so I think you would really benefit from it! If you google ERC GirlTalk, the site should come up and you can request membership!

  6. Hi All,

    I’ve been battling this horrible disease for 15 years now. It has claimed nearly every pelvic organ I have. First it was my uterus, which was removed 3 years ago. Then it was my ovaries, cervix, and appendix, which were removed last year. This was after I held onto them for as long as I could. The pain was so intense and I had been battling with endless periods for years. Apparently at this point my ovaries, cervix, bladder, and bowels were all attached to eachother with adhesions. I bled to death after this surgery last year and barely made it literally. I am still having side effects from the major hemorrages: resolving pericardial effusion, etc. The endometriosis continued to spread to my bladder over the next few months, causing pelvic floor spasm/dysfuntion and eventually I was forced to have a neurostimulator placed becuase of the pain that it caused. Most recently I had a CT that showed some small places in my spleen that could be progression…and my OB/GYN is afraid that I have some progression in my colon as my pain is back up to 8/10 and out of control again even with neurostimulation. I did have a caudal nerve block yesterday, and was hopeful that it would get my pain under control (as it has been very successful in the past) but it only lasted 6 hours. I had to drug myself asleep. I saw my colorectal surgeon as an emergency work in today and he wants to run more tests, but tells me that there are basically two choices: colostomy or more tests and more trials, and explained that this is going to be a long process, but the colostomy is the very last thing that I want… I’m so tired. I feel like I’m fighting a disease that I can’t win. I’m 28 and I take 24 meds. It rules my life. I wish there was a cure so badly.

    • I know that this is really late….
      But I am so sorry. How are you doing now? If you care to share. You’re story is so inspiring. I’m only 18 and I can’t even begin to imagine the things that you have gone through because of this disease. I hate that you’re so tired. This site is amazing; all of these girls coming together. I feel so connected to everyone based on the fact that we all have this disease. I hope things are going well and that you can begin to control your life rather than your endo. Be strong; remember.. God chooses the weak to make them strong. We can all get through this.

  7. I had my 1st lap done on Monday 30/08/10 to investigate possible Endometriosis. I have struggled with debilitating period pain and many other signs of this disease for almost 6 years – and every time i saw a doctor i was given a different pill or told i had PID or PCOS, not once was endometriosis mentioned. It wasn’t until we started trying for a child 9 months ago that my dr referred me for surgery to investigate why. I have now been diagnosed Stage 4 – it was very deep and is blocking my tubes. Now im facing the possibility of infertility at age 25. Im struggling with many mixed emotions – if only id researched my symptoms years ago, i have no doubt i would not be at the stage i am now. Thank heavens for these support groups and forums that make you realise your not alone in this world xxx

  8. My doctor told me I had endo almost 3 years ago. I’ve had signs of it for about 6 years. But I’ve never had surgery or anything… I don’t know how bad it is. It feels like hell almost daily, but that doesn’t mean I have many growths. I mean, should I have had surgery?

    I remember her asking me if I wanted it to make sure it actually was endo by doing something invasive. But, I’m so certain it is. And I have no insurance, plus I heard even after surgery the symptoms and growth can still happen. It just didn’t seem worth it.

    I tried two different types of BC. Neither one worked well, and they were expensive. I’m currently attempting to alter my diet. I just feel anorexic, though.

  9. I totally understand the treatment things… I feel like I just keep trying new ways to relieve my pain and they can’t find anything to help me. I’m only on my third type of treatment, but I’ve been diagnosed for almost four years now. I had horrible experiences with Lupron and like you, I was very uneducated on what it did and how it effects your body. It took 7 months after my last injection for me to even start my period again. I never thought that I would pray to start my period again just to know that my body wasn’t even more broken. That’s what I thought, that my body was broken and the only thing that kept me going everyday was the hope that some day in the future I have a CHANCE to give birth. So when it took 7 months to restart my period, I was constantly losing the inkling of hope I had to have a working woman’s body.

  10. Just wanted to say that yes, you should research Lupron before you take it, but that it still may work. I was terrified of it, but it worked absolute miracles for me, paired with norethindrone. 🙂

    • I second this. It’s not for everyone but it was my best option and did wonders for me too. Going without endo for 2 whole years was amazing. Some women have reported no recurrence after the therapy even!

  11. Tan – so sorry to hear that.
    My story is also quite similar – a very happy go lucky , centre of attraction for all parties/ groups : I have now become a tired / in pain- depressed most of the time woman…
    I underwent a lapro surgery for a chocolate cyst and thats when the doc told me I have this problem … And I should try for a baby quickly else it will come back…

    My hubby and I were mentally not ready for a baby but hearing this we started trying seriously but after 5 months when we could not conceive and my endo started hurting me even without the periods – we went to the Gynaec again – who immediately told me to go for a IVF…

    You know we are so gullible when it comes to docs we lose our minds and follow them like headless chickens… We were finally going to go ahead with the ivf business

    Thank god for this fren of mine who suggested we take another opinion … Thanks god for that! Coz he told us nothing to worry – nothing to hurry
    He corrected my diet / advised walking everyday/ continue with the yoga and not worry too much about kids right now.
    Well… I started that only last week so results would take time but to start with it sounds nice and feels nice to be not called sick n infertile for once..,
    It’s painful I know… It’s depressing but keeping stress at bay def helps and if nothing else works outs Ivf is def an option

    God bless… Stay positive…. And all the best!!!

  12. So very helpful Jamee(:

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