The new #endo doctor

I met with the new Gynecologist yesterday. If you follow me on Twitter you would know I’ve been experiencing some endometriosis pain. I know I have a cyst on my ovary. This is just a feeling I have. I’ve had so many endometriomas on that ovary that I’ve become accustomed to the feeling by now. The new doctor didn’t fight me on this, she understood and agreed that I probably did then have a cyst. But… let’s get to the meat of the visit shall we.

She asked me why my former doctor had prescribed Mirena for the endometriosis. I told her it was because my periods had been 2 days of excruciating pain and very heavy flow. Then after the birth of my son, this went to 5 days. Clots the size of ping pong balls were not uncommon. It was exhausting!  And to add to it, I have irregular periods so I never knew when the cursed thing was coming. It could spring up a week early, or fool me by being a week late (many pregnancy tests were wasted this way when I was trying  for a baby). The, to add insult to injury, the endometriosis pain began coming all month not just right before my period. I needed relief, and quick! I had been anemic my entire life and my monthly “situation” only made me beholden to injections and pills and all sorts of iron laden nightmares. I was told by a doctor that I had to start eating the dreaded cow again, and I did for a long while. I smothered the beast in steak sauce to get through the unpleasant experience, but still it didn’t help. Finally came Mirena and with no periods came an even iron level. All was good, or  so I thought.

 But this new doctor is now telling me that the Mirena only works to stop the period, it does nothing to inhibit the endometriosis from growing back. I’ve read this, but I’ve also read that some women with endometriosis, that don’t have periods (like myself) find adequate pain relief with the device. But I’m no longer having “adaquate pain relief” am I?  So, these symptoms I’m having now – the discomfort with intercourse again, the gnawing pain into my thighs and groin, etc., all signs that it’s back. And I think it was back when I had that laparoscopy last October because these implants can be deep. My doctor, at the time, did a very quick look over after she released those adhesions. She was just looking for obvious endometriosis because she wasn’t originally going in to look for endometrial implants but a chocolate cyst. It wouldn’t be a stretch to assume 1) that it’s been there a while or, 2) it’s a recent development of endometriosis. But it feels deeper, like it’s in the ligaments, in the muscle.

How are we going to tackle this? Well, that’s where it gets rough. Because of my Basilar Artery Migraines, I can’t have estrogen. For now, she wants me to take Zoloft 25 mg. at night for 6 weeks. I am very skeptical and have mixed feelings about this. She says she has some patients it’s helps and some that it doesn’t work for. But she wants me to try it. My other options are Lupron for 6 months or a hysterectomy. I told her my views on hysterectomy, especially at a young age, and she agreed with me. You have to abstain from hormone replacement therapy for at least 6 months for the endometrial implants that remain in your body post-hysterectomy to die off. For young women, this is extremely difficult because the side effects of surgical menopause are often times more severe than for older women who are closer to a natural occurring menopause.

As your body ages your hormones naturally begin to decline on their own. So, take a woman in their late 40’s who’s estrogen levels are already dipping low (let’s call this a 4 out of 10). Where as a woman in her late 20’s would have an estrogen that’s still high (let’s say 9 out of 10) – these numbers are not technical, OK, just to show you the difference in ages. There is less shock going from 4 to 0 than going from 9 to 0. Imagine driving in your car at 65 MPH and slamming on your breaks – that’s a young woman getting a hysterectomy. It’s an abrupt change. Some women don’t have as much problem, and they adjust smoothly. And others have a terrible time. And you can even still have a higher estrogen count well into your late 40’s. There really is no magic age, it just depends on when your body begins going into peri-menopause, which is roughly in your 40’s. Again though, there is no magical number.

For me, a hysterectomy is always a last, last, last resort option. It’s one of those options I have to take because the bleeding can’t be stopped, or because of cancer, or something out of my control. I decided to give the Zoloft a chance for 6 weeks. I’ll go back to her and discuss if it’s helping or not, and where we go from there. I will look into taking the Lupron jump if this doesn’t work since that’s the only real option I have left at this point.

I took the Zoloft last night and it pretty much knocked me out. I still feel out of it and drugged up. I really don’t like the feeling this med gives me – just in a fog, like I could sleep all day. I have no appetite and I’m nauseous. I feel hung over. And I’m only on 25 mg! This stuff is vial. It’s doing nothing for my pain, but she said it can take time to work. I know there is research backing up that SSRI’s help endometrial pain, especially when it may be in the muscle and whatnot, but I don’t like how this is making me feel. I was on Zoloft once a long time ago and I don’t remember it making me feel like this! I wonder if it’s because of my other meds that the side effects are heightened? I just feel awful AND I have endometriosis pain!!! I want to crawl in bed and cry 😦

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12 responses to “The new #endo doctor

  1. *hugs* *hugs* *hugs*

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  3. Hey Endochick! Sorry to hear about everything, but I feel your pain. I have tried the Lupron AND the zoloft, and I can tell you how that went for me if you would like. Has your doctor considered inguinal hernias? Keep me posted!
    -Amie

  4. ((hugs)) I’m so sorry 😦 😦 😦
    J

  5. Endochick,

    I am starting with this post first for comments because the ones following it relate to it. I apologize for not posting a comment sooner. This post is so very loaded for me that I have not known how to write an adequate response.

    As I mentioned when I emailed you (was that yesterday??), I just haven’t had the energy to tackle this because I am always a bit uncomfortable discussing name brand drugs online (I won’t get into all of my boring reasoning on this).

    Also, like I mentioned in the email, there’s no diplomatic way to say that I’m a bit uncomfortable with what your doctor has said to you… but it sounds, from what you’ve described here, like your new doctor said you have 3 choices: Zoloft, a hysterectomy, or Lupron. It sounds like she has nailed your options down to those 3 things and only those 3 things. Maybe I am perceiving it incorrectly but that’s how it comes across to me.

    OK. Now I just chatted with you offline and I know you know where I am coming from. However, for the benefit of anyone reading this comment… I was truly puzzled when you said the new doc wanted you to try Zoloft for endometriosis pain.

    I am fully aware that tricyclic antidepressants (a class Zoloft does NOT belong to) are sometimes prescribed for “chronic pain” at low doses (lower than they’d be prescribed for treatment of depression).

    To be clear, “chronic pain” is a very broad category. So even if we were talking about a tricyclic antidepressant… the fact that they are sometimes used for “chronic pain” doesn’t necessarily mean “endometriosis pain” (which is just one type of chronic pain out of a great many).

    For example, I was given low-dose tricyclic antidepressants to attempt to treat my vulvodynia. It was NOT prescribed for my endo pain but for my vulvodynia pain. (By the way, in my case it didn’t even help that).

    Now, Zoloft is not a tricyclic. It’s is an SSRI. I am not a doctor or pharmacist; I am not giving medical advice. I just want to say that I have never heard of Zoloft being given for the purpose of treating endometriosis pain. I was in local/in-person endo support groups from 1992-2008 that met monthly and I went every month. I never heard of this.

    Now, this may be a new trend I’m unaware of. For all I know there may be some new research regarding Zoloft and endo. You may get comments after mine of other people on this medication with the intent of it treating endo. ?? All I know is I have never heard of it being used this way.

    As far as Lupron is concerned, this is a loaded topic in and of itself. I won’t get into a big, controversial Lupron commentary. Let me just say that there are some potential side effects that are severe. I could elaborate but I know that you are well-aware of the lovely Lupron side effects that affect some people who use it.

    Finally, hysterectomy (as I know you are abundantly aware) does not cure endo. So, the fact that this doctor is suggesting this as a possible treatment option concerns me. We’ve talked about this issue before and, again, I know you’re aware of how loaded this issue is. Deciding to have a hyst is a huge decision. Huge.

    Now, if your new doctor were accurate in portraying these as the ONLY 3 options you have, that would be one thing. However, to my knowledge she made no mention of Chi Nei Tsang, Maya abdominal massage, chiropractic for pelvic pain, seeing a naturopath to investigate additional complementary medicine options, etc. (I know you were unable to do acupuncture). I wish you could because it helps me SO much! 😦

    In any event, I absolutely think the idea we discussed (asking your physical therapist if they do PT for pelvic pain there) is an excellent one! I have had PT for pelvic pain by a PT who had special training treating pelvic floor dysfunction/pelvic pain. She was amazing and helped not just me but many of my local endo support group members. (She was NOT with one of those fancy centers out there that charge an arm and a leg and come across like they can basically cure infertility. She owns a local PT center and she got interested in PT for pelvic pain when she herself had pain following childbirth. She was already a PT and went back to school for training on pelvic pain PT).

    So, if I were you… I would definitely try out one of those other doctors in your group besides this woman who has basically made you feel sicker.

    I would investigate PT for pelvic pain.

    I’d look into various complementary medicine modalities (above is just a sampling) as needed.

    Ultimately, it just doesn’t sound like this woman is helping you and it does worry me that she seems to have pulled that “scare the patient into thinking they are almost out of options” zone… especially when one of those options is a hysterectomy… which doesn’t cure endo. You are VERY young and a hyst is a last, last resort type of surgery. If you had cancer, it would be another story. As a means of treating endo, though?? 😦

    Sorry if I sound preachy. I know we’ve discussed lots of this offline but I think it’s important to get it posted for others who may find it helpful.

    I hope you feel better soon!!! 🙂

    Jeanne

    • My dearest endochick,
      What’s the latest? How are you feeling?….Jeanne has a lot of great info….I have had endo for 20 years and have had 9 surgeries…If you are trying to decide on what will be helpful, I would advise to get information from a many people as possible….That means listen to your doc if you trust him/her and listen to your endo experienced physical and internet friends..
      This is a very difficult disease to understand and treat so there are a lot of well intentioned people who think they know how to help you, but don’t have a clue…

      Talk to people that have actually gone through the treatments your doc what’s you to try…
      If you are interested in more info on any of the treatments I can give you my take….Everyone’s experience will be different, but overall you will find that there really are no good sucessful drugs out there that work…You will be told that you have 3 choices, but the cold hard fact is that there is absoutely NO CURE for endometriosis….Lupron is not a cure and has a lot of very, very negative side affects….I did a show with Dateline (I don’t think it’s on anymore) about 8 years ago…It was taped in Chicago so there is well documented information on this drug and it’s not good…
      Frankly I surprised your doc wants to talk you into this….

  6. *hugs* I’m so sorry to read you’re having so much endo pain.

  7. The Friday just past, I had a four hour operation to clear away all the scarring and cysts caused from the endometriosis (I am at stage 4 now). I had what is called an salpingo-oophorectomy or unilateral salpingo-oophorectomy on my right side (total removal of my right ovary and tube). I have sub’ed to you Rss feed so I can keep up to date with your blog 🙂 Ree

    • Thanks for subscribing. Sorry to hear about your surgery and the loss of your ovary and tube. I hope you get speedy recovery and are pain free as long as possible.

  8. I had stage 4 endo. Last May had surgery because my chocolate cyst burst. That’s when they found the endo. I did Lupron for six months. It was heaven at first. My teenage boy acne cleared up, my pain was gone, my chronic hip and low back pain was gone, and I could eat normal food again. Then I started having panic attacks three months in. I lost faith in myself and couldn’t handle the smallest problems. Now over a year after my last shot I have acid reflux and heart palpitations, two problems I didn’t have before. My memory is worse. And my periods never went back to normal, took me a year to ovulate, and all my endo is back.
    Now trying acupuncture and Maya abdominal massage. Too early to tell. Good luck with your endo journey and keep sharing. Thanks.

  9. Pingback: Abdominal Adhesions | Abdominal Massage For Adhesions | | Top Online ResourcesTop Online Resources

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