Adenomyosis and Surgeries (Health Update)

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If you’ve been following my health journey, here’s a recent update! Here’s my health update from this summer about my adenomyosis and surgeries

If you've been following my health journey, here's a recent update! Here's my health update from this summer about my adenomyosis and surgeries

Photo by Peter Conlan on Unsplash

Hey friends, I wanted to give a health update! The last time I wrote about my health (in January 2018), I talked about possibly having adenomyosis, my diagnostic laparoscopy, and my experience with the Mona Lisa Touch laser treatments.

Fast forward 11 months: it’s been quite a ride this year! After I talked to my doctor who thought I had adenomyosis, I decided to try out some supplements to see if they would help my pain problems.

But they didn’t help. Nothing seemed to help the pain I was experiencing. So I finally talked to my doctor about getting a hysterectomy. She said that it would definitely help with the majority of the pain I was having, so I decided to get a hysterectomy in May.

Disclaimer: this post is for informational purposes only and is not intended to replace the advice of your medical professional, doctor, or physical therapist

Read up on the posts about my health journey:

  1. Living with IC: Finding hope through the pain (December 2015)
  2. Interstitial Cystitis Resources and Helpful Tips (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 (January 2018)
  6. Adenomyosis and surgeries (this post, November 2018)

Adenomyosis and hysterectomy

I knew that I finally wanted a hysterectomy. I had tried just about everything to help the pain I had with intimacy with my husband, and nothing helped. I was at my wits end after dealing with this for several years (I think I’ve had adenomyosis for much longer, but the symptoms changed as I got older).

My doctor let me know that this would help my deeper pain, but may not help my more superficial pain. But I was willing to roll the dice and give it a try.

Two surgeries in one day

So at the end of May, I had a laparoscopic total hysterectomy (keeping my ovaries). I was actually looking forward to it! The hope of getting some relief really helped me not to worry too much about the surgery or the recovery.

In the process of my surgery, my doctor accidentally cut my left ureter 😮 I had to travel by ambulance to another town for a robot assisted laparoscopic ureter repair that night. Some doctors say that ureter damage is a common injury during hysterectomy, and others say it isn’t common at all. But either way,

My doctor is great, and I still love her (I’m still seeing her). But sometimes accidents happen. My recovery was just a little bit longer due to the second surgery, but I recovered well.

I had to have a stent in my ureter for 6 weeks, and had to have a catheter for a week (no fun), but everything worked out okay. The stent made activity like walking really difficult until it was removed. If I moved around too much, it started to hurt a lot. So I couldn’t do too much walking until the stent was removed after 6 weeks.

After my surgeries, I checked with the lab at the hospital and they confirmed that I indeed had adenomyosis. Finally an answer to {most} of my pain! The months following surgery, I kept tabs on my pain levels and the hysterectomy had helped with most of my pain.

Even with the medical mistake and the second surgery, I’m still very glad that I got a hysterectomy. It’s not for everyone of course, but it helped me a lot, and we had already decided several years ago that we weren’t going to have more children, so it was a good decision for us.

Oddly enough during my surgery recovery, I had no seasonal allergies. Even though my recovery was during summer, I still was able to go off almost all of my seasonal allergy medications for several months.

My body was so busy healing up, that it paid no attention to my seasonal allergies (although I did have contact allergies to surgical tapes, ouch). Once I was completely healed, my seasonal allergies started up again and I had to start back up on some of my other allergy medications again.

Very weird and unexpected, but I was very happy to have a few months relief from seasonal allergies!

Disuria or Urethral Syndrome?

Even after the hysterectomy (which took away most of my pain), I still had a little bit of superficial pain sporadically. What was it from? I continued to investigate what triggered my pain and what was causing it.

I started to figure out that the bladder/urethral pain that I have had for several years was still a problem. Most of my pain had gone away, but I was still dealing with urethral pain. My new urologist who did my ureter repair thought it was disuria, but I wasn’t convinced.

So I did some more research and believe I have urethral syndrome (basically urethral irritation that’s not caused by UTI or bacteria). Some foods trigger it for some people, and I think that is very true for me! Certain foods cause more problems than others, so I have to keep an eye on what I’m eating.

I think my urologist was partly right about the disuria, but I think for me disuria is a symptom of the bigger problem (urethral syndrome) rather than the root cause. Making sure I completely emptied my bladder helped some with the pain, but certain foods and other things still are triggers that I have to manage.

So this part of my health journey is still a process. I’m going to keep asking questions, talking to doctors, and doing research until I can get to the bottom of things or find some relief from symptoms with diet changes, supplements, or even medication.

Changes and hip surgery

This year has brought about quite a few changes for me so far, not just with the hysterectomy, but with my work. I stopped teaching yoga and group fitness in February to focus on my own health more.

And in September, I tore some cartilage in my left hip (thanks a bunch, hip impingement).

I ended up having to stop my personal training and stopped my exercise for a while (except for walking) until I can get my hip fixed. I’ll have surgery probably in the next couple months, and the recovery is long (4-6 weeks on crutches, and 4-6 months until I can return to full activity like running).

Since The Fit Cookie incorporates fitness posts and workout posts, I’ve had to put those on the back burner for a while till I can get my body healed up. But I should be able to start running and lifting again next summer! Once I have that surgery done, I’ll post about it.

2018 has been quite the year 😉

Disclaimer: this post is for informational purposes only and is not intended to replace the advice of your medical professional, doctor, or physical therapist

6 thoughts on “Adenomyosis and Surgeries (Health Update)”

  1. I have to say, I had a lot of the same stuff going on. I had severe anemia, pain, bloating in my lower stomach, developed food allergies to everything, heavy bleeding and so on. I practically ran begging for the hysterectomy. I just went through the procedure a week ago and I am happy as peach pie! I have so much energy, I can eat normal, I feel fantastic! I kept my ovaries as well. Adenomyosis was my diagnosis along with multiple other things. I feel like keeping a diseased uterus etc was causing my body to react in crazy ways. What a difference!!! Thank you for your blog!

    Reply
    • You’re welcome Jenny! It’s pretty crazy how that happens, it’s been over a year since I had my hysterectomy and it was one of the best things I’ve done. I feel so much better and my digestion has improved a lot. It definitely makes a difference when it needs done! 🙂

      Reply
  2. Hey,

    I’ve just seen your updates after my previous comments. I’m very interested in the link between adenomoysis and your bladder issues.

    I’m wondering if my bladder symptoms of having pressure and feeling need to urinate all the time (nightmare at night, flaring up insomnia) could be the adeno not a UTI that needs long antibiotics or IC etc…I’ve been treated for a UTI as a precaution twice now but each time it’s returned albeit at different return rates…evettume ive has white blood cells & blood in urine but no cultures grown in labs.

    I’ve never had bladder issues ever, probably cystitis last when I was a teen (now 41) and then that was rare. Hmmm….I’m leaning towards asking for a hysterectomy as I’ve had my kids and it would at least cure my heavy periods, painful intercourse and sporadic shooting bowel pains when I’ve a full bowel…my gut feeling is the adeno is causing pressure on my bladder and mimicking a UTI by causing inflammation…no pattern to my symptoms at all it comes n goes….interesting you suffered for years thinking IC etc but adenomoysis might have been the issue all along! I know I have it I saw my laparoscopic surgery photos – gynaecology all really healthy including a cystoscopy showing normal bladder…by my uterus is a big red inflamed ball that looked fit to burst and that image was on day 7 of my cycle so must get even bigger!

    Best wishes
    Freya
    X

    Reply
    • Hi Freya! I definitely could be one of the things causing it. I still have some bladder pain occasionally when I eat certain foods or don’t drink enough water (I think I have urethral syndrome), but after my hysterectomy my bladder pain has improved 80-90%. My IBS issues have improved as well, I still have IBS but just not as bad. Even with the mess-up in my surgery and having to get a urethral repair that same day, I am still very happy with my decision to have a hysterectomy. The adenomyosis was causing a lot of problems for me that I wasn’t able to piece together until I finally got that diagnosis.

      Reply
      • Thanks so much for your quick reply, I’m so glad your symptoms are so much improved/gone. Have you followed any gut health things like diet (I’ve cut out dairy, grains & legumes be be paleo), adding probiotic foods, kefir, bone broth etc..? Wondered if you did if this helped you? So glad I’ve my gynaecologist follow up this week with symptoms returned. Mine isn’t pain as such much a feeling of pressure and like I always need to wee but usually not much there! My best friend had adenomoysis and endometriosis and after her hysterectomy her bladder complains went. At one point she had a cystoscopy and was told she had IC too as all red and inflamed…Just shows adenomoysis can cause bladder issues – hardly surprising when a big fat uterus is pressing and and aggravating the bladder & bowel. I just want to fast forward the months of monitoring patterns and trying antibiotics, hormonal drugs, possible hysterectomy to get it sorted! I’m not very patient at being ill and feel cheated as I’m such a health & exercise freak I feel I shouldn’t get ill!
        X

        Reply
        • I have a lot of food intolerances and allergies, so that has always been my guide for diet typically. I did start a modified low FODMAP diet a couple years ago and that has helped my IBS quite a bit. I avoid sugar alcohols (those really really bother my stomach), I’ve been dairy free for about 20 years since I’ve been allergic to it since I was a pre-teen, and I also have a soy allergy. I eat mostly gluten free, but still have some gluten and wheat on occasion. Gluten doesn’t bother me nearly as much as soy and dairy do. I have developed intolerances/allergies to foods like brown rice (I can have white rice), eggs, pumpkin seeds (pretty bad allergy), beans, etc. It makes eating very interesting at our house since my kids have tree nut and peanut allergies, but we work around it 🙂

          Reply

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