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Mona Lisa and a New Diagnosis (Health Update)

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Mona Lisa and a New Diagnosis: Looking for answers for some of my health problems over the last few months, we’ve some things that have helped my symptoms and a new diagnosis!

Mona Lisa and a New Diagnosis: Looking for answers for some of my health problems over the last few months, we've some things that have helped my symptoms and a new diagnosis! - @TheFitCookie #health #wellness

Hey friends! It’s been a bit since I posted a health update (about 6 months), so I wanted to keep you guys posted about how my health journey has been going these days. We’ve done quite a few things over the past few months to see what works, and I have a few things to share. I really hope this can help women who are going through similar health problems!

Disclaimer: this post os for informational purposes only and is not intended to replace the advice of your medical professional.

Read up on the posts about my health journey (in order by date):

  1. Living with IC: Finding hope through the pain (December 2015)
  2. Interstitial Cystitis Resources and Helpful Tips (this post) (December 2015)
  3. Misdiagnoses, Hormone Imbalance, and Life (February 2017)
  4. Hope for Healing: Health Update and IC Diet (July 2017)
  5. Mona Lisa and a New Diagnosis (this post, January 2018)
  6. Adenomyosis and Surgeries (November 2018)

Last fall, on top of some of my other symptoms, I started to have low back pain to one side and I suspected an ovarian cyst. Went to the doctor to check, and sure enough, I had a moderate sized cyst on my left ovary. Since it wasn’t too big, we decided to leave it alone for a bit and check on it again 2 months later to see if it had gone away on it’s own.

For a month or two, I had referred hip pain caused by the cyst which made yoga a little more uncomfortable. So frustrating! But I kept teaching yoga, I just made sure that I wasn’t pushing myself into poses that didn’t feel great (already something I’ve been doing with my FAI).

After a couple months, we did the second ultrasound and the cyst had gone away. Interestingly enough, the referred hip pain took another month or two to go away completely after that.

But after that second ultrasound, my doctor had a new diagnosis that could explain all the symptoms I was having: adenomyosis.

Adenomyosis

That was definitely something I’d never heard of before! There are several different types of adenomyosis, but essentially it is where the endometrium grows into the muscle of the uterus where it doesn’t belong. So adenomyosis is kind of like endometriosis, but within the uterine muscle.

There is no definitive way to diagnose adenomyosis without a hysterectomy and subsequent biopsy, but doctors can make a pretty good educated guess through ultrasounds (like in my case) or MRIs and patient history.

There is also no solid cure for adenomyosis except for hysterectomy and menopause, but symptoms can be managed with hormones and medication. Hormones aren’t really an option for me since estrogen and birth control flares my IBS like there’s no tomorrow, so this is going to be a tricky thing to deal with.

Part of me is really relieved that we *pretty confidently* found the source of my symptoms (bladder/urethral pain and painful intercourse, aka dyspareunia, among other things), but then came the question of 1) how we were going to deal with the symptoms without side effects, and 2) will I end up having to get a hysterectomy in the long run.

One of the things that has helped my symptoms somewhat (they haven’t gone away completely) was the Mona Lisa Touch laser treatments.

Mona Lisa Touch

Last fall during one of my visits with my doctor (she is amazing by the way!), she mentioned a laser treatment that can help with some gynecological pain and might even help with my bladder/urethral pain, all without hormones. I went home and did a bunch of research on the Mona Lisa Touch laser treatments and decided that I wanted to give it a try to see if it would help my symptoms.

The laser treatments are not covered by insurance, so I had to pay out of pocket completely, but they had a discount on them if you paid for 3 treatments up front so we did that. They recommend doing 3 initial treatments, 6 weeks apart, and then once a year or once every two year follow up treatments for maintenance.

You can read up on exactly how it works, but basically they use a CO2 laser to safely cause micro-damage to encourage tissue regeneration with more collagen and elastin. It isn’t painless (especially if you have it done externally in the vestibule area), it’s uncomfortable, and it feels like a bad sunburn for a day or two, but it works.

I went through the initial 3 laser treatments, spaced out 6 weeks apart from each other, and in spite of the temporary discomfort, I had pretty good results with it. I feel like the bladder/urethral pain and the dyspareunia had improved! It really did help out, but didn’t take away my symptoms 100%.

Over time, I may need to get these treatments again each year or every other year, but we’ll see how everything goes. It is expensive, but I feel like it’s worth it for me, so I’ll save up the money for it if I need to.

Laparoscopy

Another one of the things we wanted to check for was endometriosis. My doctor and I decided that it would be great to cover our bases and eliminate other possibilities of my pain and symptoms, so 1 week after my last laser treatment (about 3 or 4 weeks ago) I had the laparoscopy to check for endometriosis and it turned up nothing.

Everything looked fine in the laparoscopy, but I’m still having symptoms, so all signs right now are pointing to adenomyosis.

So far, everything has been a process of deduction:

  • Pelvic floor physical therapy for 3 months (very little to no relief of symptoms)
  • Cystoscopy to check for interstitial cystitis (no IC)
  • Antibiotics for possible chronic UTI (only short term relief initially)
  • Blood draw to check hormones (hormones are normal)
  • Estrogen vaginal cream (works but bad IBS side effects for me)
  • Natural hormone supplements and creams (no effect)
  • Mona Lisa Touch laser treatments (has helped! But symptoms not completely gone)
  • Laparoscopy to check for endometriosis (no endometriosis found)
  • No chronic ovarian cysts

In the end, if it is indeed adenomyosis that I have, the only way to completely fix it without hormones is menopause (that’s at least 20 year away for me), or a hysterectomy.

Right now, I’m feeling good that we’re pretty sure we’ve pinpointed what’s going on. But we also need to try and figure out where to go from here. A partial hysterectomy isn’t ideal and it’s not something I’ve ever wanted for myself, but if that is my option in the end, I’m okay with getting it. I’ll keep praying that God guides us in the right direction, and He hasn’t failed us! He always shows us which steps to take next.

I follow up with my doctor next week to see how things are going lately, and I’ll share more about my health journey as we learn more over the coming months and year. Hopefully my blog posts about my health journey helps if you’re struggling with similar issues!

Peace and blessings for the year ahead, friends!

15 thoughts on “Mona Lisa and a New Diagnosis (Health Update)”

  1. Hello,
    I’ve been diagnosed with Adenomoysis. Luckily my laparoscopy showed no Endometriosis or any other issues in my gynae region and my cystoscopy showed a normal bladder.

    My main symptoms are mainly bladder related – feeling the need to wee all the time which is horrendous at night as giving me insomnia – doesn’t seem to be a pattern to it either – been keeping a diary of cycle and symptoms. I do get heavy period and sometimes shooting bowel pain when full in morning and same with sex but I can live with these are all more temporary symptoms!

    Due to see Gynae next week as follow up as one week after my surgery investigations bladder issues returned so he gave me antibiotics for a possible UTI…but they returned two weeks after course finished…I might have to go on a long course of antibiotics to see if it’s a pesky UTI that won’t shift…after that he said if symptoms still there try hormone therapy to induce menopause to see if they go aka a hysterectomy will solve symptoms.

    Thankfully I’m 41 and had my kids so I up for a hysterectomy if needs be! Just want to get to the bottom of it all aka is adenomoysis causing bladder symptoms by pressing on it??? Or is this a unrelated bladder UTI issue….I’ve never ever been a UTI person before..,my health n fitness are great!

    Wishing you much luck and keep us posted on your journey, sharing really does help.

    Reply
    • Keep me posted with how things go for you Freya! A hysterectomy was good choice for me, I felt a little weird because I’m so young (34) but knew it was the right thing for me when everything else I tried didn’t help. Hopefully you can what works for you, let me know how everything goes 🙂

      Reply
  2. I have been having this similar journey and am only in the beginning stages. I have been contemplating seeing a urologist after my appt. yesterday with gynecologist. I know with certainty that I will pursue seeing a urologist now. I had the laproscopy procedure done a few weeks ago to check for endometriosis as well and nothing was found. She did a cytlscopy at the same time and saw “minor irritation” but wasn’t not 100% confident that IC is what is truly going on. I’m supposed to start Elmiron this week. I don’t feel great about taking a medication that might help for something I maybe have! Thank you so much for sharing your story! I never had symptoms like this before in my life. I delivered a health baby girl in late December and 6 weeks later thought I had a UTI…which was negative of course and led us down this road. It’s been very frustrating and exhausting with appts, pain and taking care of a newborn!

    Reply
    • Hi Diana, I definitely feel for you! Having those health issues and a new baby can be tough to deal with, but I know you’ll do great 🙂 I hope you can find some relief soon, keep me posted how you’re doing and what you find out

      Reply
  3. This is almost exactly what I am going through and no doctor can figure it out. Just wondering if your doctor is in Southern CA at all?
    Thank you for sharing your story!

    Reply
    • Hi Melissa, you’re welcome and thanks for stopping by! My doctor is in Wyoming, she has been really great and understanding 🙂 I’m still struggling with this off and on, even though I started estrogen cream again. If it’s adenomyosis related pain, I may consider getting a partial hysterectomy, but I’m going to have to talk to my doctor more about that to see if that will even help or not. I plan on posting more as I get more news!

      Reply
      • Yes, please keep us updated! I know you said that you rested your estrogen levels and they were normal, however the cream does seem to be helping you? I have normal estrogen levels, however I used the cream for just a few days and did feel a little better. I go to the Mayo Clinic Monday, hopefully I can find out what is going on. I am going to mention to my doctor what you have been diagnosed with. I hope you find some relief!

        Reply

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