Finding the courage to discuss endometriosis symptoms

In the last years I have been worried about endometriosis but when I tried to talk about it with my old doctors they cut me off saying that I had no reason to believe I had it. I didn’t insist because I was too ashamed to talk about it anyway. The thing is, I have gone through plenty of website discussing endometriosis and I believe I have reasons to worry. 

After so many failed cycles, I finally decided it was time to talk. I own a big thank you to a friend who was kind enough to share her own I-may-die-of-shame experience and gave me the final push I needed. Really, thank you!

This doctor finally listened. Or rather, he read: since I was too ashamed to talk about glamorous symptoms , I ended up writing a list and handing it to him. My list of endometriosis symptoms is as follows:

  • Painful, heavy and very irregular periods, often with clots 
  • Pain in the lower abdomen, pelvis and lower back
  • Diarrhea during periods
  • Painful bowel movements right before and during periods
  • Occasional bleeding from back passage
  • Often cramps around back passage right before periods (so strong I generally cannot move)
  • ‘Spotting’ or bleeding between periods
  • Pain during sex in some positions
  • Infertility (of course!)

Sorry I know this is TMI but I am writing this down so if others have the same and read this list, they know they are not alone.

The gynecologist agrees with me that I may have endometriosis and told me to get an MRI. As IVF is the solution for endometriosis and I am already doing it, he thinks that it’s not worth doing a laparoscopy for now. 

Any thoughts from endometriosis experts and sufferers?

Other than this endometriosis discussion, we’ll go ahead with another frozen transfer. I’ll start the meds to induce my period as soon as I feel ready and I think the FET will be sometime between late September and early October. After all the failures this year, I can’t feel enthusiastic about it. But we can only keep trying.. 

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33 Responses to Finding the courage to discuss endometriosis symptoms

  1. I have some of those symptoms too but have also had doctor’s brush off the probability of endo. My current RE is more open to investigating it, but we are going to pursue our 1st IVF before we do anything. Good luck with your FET cycle.

  2. drunkstorks says:

    I have endometriosis and we’ve been trying since 2011 technically. I did about a year of Clomid (totally wrong med for me), 2 rounds of IVF and just finished my first FET (currently waiting for second beta to come back). My endo journey started about 8 years ago so I’ll try and summarize: had a lap done at 23, was told it wasn’t that bad/you’ll be fine but periods did lengthen out at all. I had frequent periods, not obscenely heavy but crazy painful. It’s been an evolution for pain management as my body seems to acclimate easily and then the meds just stop working. I’ve been on morphine and dilaudid for the last year. My current RE seems to think my endo is far worse then anyone ever likely originally thought. I’m absolutely sure I’ll need another lap in the next few years – I’d like to know for sure where it all is.
    I don’t know what sort of protocol you’re on but my RE did intralipids, steriods, aspirin, and PIO injections for this FET and so far (hoping, praying, wishing) it’s been working. My first beta came back at 902 and sitting on pins and needles today for beta #2. My first BFP of my life🙂 Some women also get a endometrial scratch done before implantation as well. And there is an implantation glue that’s been used in the past, not many women are offered it but some RE’s still use it.
    I wish you the best with your endo inquiries and so glad that you’ve spoke up! Endo is absolutely horrible. You can feel your body wanting to work to do what it’s supposed to but somehow it ends up fighting itself and you’re left with the aftermath; childless and in extreme pain. It’s the cruelest of all the jokes life can play on you so I get it. I read Dr Beers book “Is your body baby friendly” which prompted me to change to my current RE. It fits my thought process of what endo really is and how to deal with it and fertility. Hoping you get some more answers and success in the near future!

  3. No one ever mentioned endo to me, but they found I had it with my ectopic. I have the same symptoms you listed above, so you’re not crazy to be thinking you have it.

  4. Tori says:

    I know I’ve had friends who had endometrial scar tissue removed and were able to conceive, so if they find you have scar tissue in your uterus, you may ask if there are surgical options for removing it before going forward with more IVF. But it probably depends on what they find in the MRI. Hope that now you’ve talked to your doctor about this you will have more success!

    • kiftsgate says:

      Thanks for the encouraging story. I will start with MRI and then we’ll see. I was planning to have surgery (ovarian drilling) done anyway, so we could combine the laparoscopy. we’ll see…

  5. babydusted says:

    If you suspect endo, I have no idea why your doctor would not do a lap and remove it if you have it. That’s the first thing they did with me before we even started fertility treatment. They wanted to make sure everything was clear in there! Endo leads to low ovarian reserve and also I recall something about the little black spots secreting something that may make it harder to get pregnant. My surgery was a few years ago so I can’t remember exactly what the details were. I had it lasered out, but it does come back eventually. My new doc actually cuts it out and says then it does not come back after that. I was only stage 1 the first time so I didn’t have the surgery again.

    • kiftsgate says:

      I don’t exactly know but I think he’s trying to avoid a laparoscopy by starting with the MRI. Also I think the treatment for a FET wouldn’t change much so he feels it’s ok to go ahead with it. Then the idea is to leave the operations for after FET so if it works we can avoid them.

  6. Kay says:

    Only just started reading your very well written blog so apologies if I am mentioning things you have looked. Please read Dr Beers…is your body baby friendly book if you can, I had four txs to conceive my daughter as I had endo. Same symptoms you describe. It is linked to you immune system and the first time I had full immune treatment with ivf it worked. Just a thought….. I wish you the best with your FET xxxxx

    • kiftsgate says:

      Thank you for reading and for your suggestions. I will ask about the immune treatment. Thanks for the wishes. xx

      • Kay says:

        Just to say I had two laps and have severe endo but this was ten years before doing txs. I decided not to try and create a window of opportunity by having another lap but focused on getting the right protocol. Despite the endo I have just had a natural Bfp after seven years and four txs to have my daughter. I think the endo itself did not stop me conceiving g but it affected my immune system causing the embies to be attacked so early I never had a positive test. With my natural Bfp my immunes were tested and were back to normal . They reset after having my daughter.

        it’s such a complex thing but please don’t think endo makes it impossible. All the best xxxx

  7. My last (worst) RE said the same about not needing to remove endo for IVF. But I think that’s BS and if we had done IVF this fall then I was planning to have a lap in August. An ounce of prevention is worth a pound of cure, IMO, and I wasn’t prepared to do IVF without making sute my uterus was healthy. If it was the RE’s money and his baby on the line, I bet he’d do the f*ing lap. XOXO

    • kiftsgate says:

      Thanks! Since I’ve done IVF already I think it’s ok to go ahead with FET now. In any case I don’t trust the quality of these embryos. I won’t do another IVF cycle without properly checking on this endo thing though. xx

  8. E v e l y n says:

    I have endometriosis but have no shame about it. That might be because I didn’t know I had it until I started infertility treatments. I was actually more frustrated that no one thought to check this when I was a teenager and in pain during my periods. When I was diagnosed it was quite advanced but I’m extremely lucky to have very little pain. It’s the reason I had to do IVF and I believe it contributed to egg issues for me although no doctor has told me that.

    Because I’m relatively pain free as long as I’m moderately active it doesn’t impact my life all that much. I have discovered there is a recomended endometriosis diet which usually includes no dairy. When I sort of follow it and exercise I usually feel pretty good.

    So I don’t really have any advice except to not be ashamed of it. It sucks but it’s just part of you. I can’t see a downside to talking about it.

    • kiftsgate says:

      I’m not ashamed to have these symptoms. Same as I am not ashamed to be infertile. There is nothing to be ashamed of. I am just ashamed to talk about it. Or rather I don’t like to talk about it.. I think part of the problem is that I don’t really know how to describe these things in French. In my own language I would have felt ok but I didn’t really know how to describe the stuff without making a fool of myself, hence the list😉

  9. jesselyn6585 says:

    You are amazing. I know how hard it is to talk about private things but by creating this list you may have helped someone. Sending you love!

  10. barrenbetty says:

    I’m so glad you managed to speak to them. It’s hard enough telling doctors embarrassing stuff, nevermind telling them in a different language!! You did great. Hopefully the MRI will shed some light on what is going on in there. I hope it’s not endo and it’s something simple to fix. Those are not nice symptoms to be living with😦 Having said that, my operations ended up being extensive and included operating on bowel, kidneys etc. err, didn’t get me pregnant but it greatly improved the pain and my day to day life! Good luck for the scan xxxx

    • kiftsgate says:

      I also hope it’s something easy to fix.. sorry you had to go through those operations. doesn’t sound nice at all. But I’m glad at very least you are less in pain. Thanks!! xx

      • barrenbetty says:

        I am hopeful for you it isn’t really bad endo if they haven’t seen anything on the scans so far. I had 12-15cm endometriomas on and in my ovaries (multiple ones) which they could see before the lap and my tubes were swollen and pulled into the wrong places:/ In a way I hope it’s not endo, but I also hope it’s something they can see and fix for you easily. It’s horrible being in pain xx

  11. NotSoNewtoIVF says:

    Oh sweetie, so rotten. I have mild endo, had a laporoscopy in 2012 and they removed some but not much. Think it’s grown back but as I’ve been doing ivf didn’t want to mess around in there again! I had an internal scan of my ovaries before the lap but they couldn’t see anything. Hope so much you get some answers xxx

    • kiftsgate says:

      Thanks lovely. I hope the IRM will give some answers and if not I’ll probably get a lap done when I get my ovarian drilling done. May as well have them properly fix things in there! xx

  12. Good you find a doctor who listen your pains. I hope the exam will be fine, i hope that if endometriosis is find, something will can do for help you to don’t suffer and to give more chance for ivf. Fingers are crossed for the next step and everyting. Xoxo

  13. redbluebird says:

    I’m guessing an MRI can only detect the endo if it’s more severe? Otherwise, why do they jump to doing so many laps? I’m not that educated on this. My endo was found while doing a lap for another purpose (removing a cyst) and the doctor/surgeon left it. I was upset they didn’t remove it, but since they didn’t, the RE didn’t recommend any treatment for it. He thought it was better to just keep trying to get pregnant (since I’m “old”) rather than wasting time on another lap or Lupron. I was lucky to have a successful pregnancy and I still wonder what impact the endo has on my fertility. I’ve never had very bad pain so it doesn’t affect me too much in any other way. Maybe I’ll see when I try for #2.
    I’m glad your doctor is listening to you, and I love the idea of writing down all the symptoms. I hate talking about embarrassing things with near strangers– even doctors.
    Good luck– hope the MRI is clear!!!

  14. Tales of a Twin Mombie says:

    I suffered from endometriosis for a really long time. I suspect I suffered from it since I was a teenager. I ALWAYS suspected I had it and so did my mother, who is a nurse. Doctors were always and I mean ALWAYS so quick to brush it off. For some reason, they don’t want to diagnose people with it. Why? Maybe because it’s hard to officially diagnose until you have a laproscopy done? I don’t really know but I can tell you that I blamed my doctors when it came to me struggling with infertility issues. If my doctors had listened to me, or maybe if I were persistent enough, maybe my endo wouldn’t have gotten as horrible as it got? The ONLY person who helped me was my RE. Finally, when I went to him he confirmed what I suspected for years and years. I had endo. Not only did I have it, but it was severe. Under his guidance we had a laproscropy done to correct it but they were unable to because of how severe it had gotten. One of my tubes is wrapped around an overy and the other is adhered to my uterus..basically my insides were a hot mess and we had to jump straight to IVF. I wish doctors would be better at listening and would not be afraid to listen to their patients. Most of the time, your gut is right. If you ever need any help or have questions, while I am no expert, feel free to ask! We currently have twin boys and went through a journey to get here, but nonetheless we got here. xo

  15. Weylin says:

    I think I have endo too, I have the poor digestion and lower backache etc, the only symptoms I don’t have is the recurrent menstruation pain (which my mother had, in spades) or irregular periods. I am really scared of the laproscopy though, I’m scared of the pain and also of ovarian damage, as they are removing tissue really close to the ovaries. My first RE said that he would try the lap but admitted that bringing on early menopause or affecting the ovaries is a real risk. The second RE said that he would not do the lap because it is easier to control the endo by shutting down your system, similar to menopause, if you think that will improve egg quality. However, he felt that the effects of the lap are extremely temporary and you basically have to stim right away to try to get any improvement.

    I wish there were better stats on whether and how much the lap actually improves recurrent IVF or natural conception success.

    Weylin
    http://www.wishingawayinfertility.blogspot.com

    • kiftsgate says:

      it’s crazy how doctors dont agree with each other. so many approaches and differences amongst clinics and different REs.. it makes it hard for us to decide what to do… I also wish there were better stats on laps, but also personally ovarian drilling.

  16. Dani says:

    I have been tested for everything, save endometriosis. My obgyn wants to do a procedure later this year to confirm. I want to move forward, but hubby is nervous after all of my health issues earlier this year. So, we’ll see…

    Thank you for sharing this.
    Truly.

    With blessings,
    Dani

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