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My Hysterectomy Story

I recently started the Adenomyosis Fighters Support Group on Facebook, and I have noticed that a lot of women seem to have fears about having a hysterectomy. I want to alleviate some of these fears by sharing my own hysterectomy story.

I suffered from debilitating pain and very heavy menstrual bleeding for about seventeen years. During that time, I never received a definitive diagnosis. After a failed endometrial ablation, my OB/Gyn finally gave me the option of hysterectomy. I jumped on that option immediately because I was just so sick of dealing with all the pain and bleeding.

I was terrified. I was terrified of the surgery itself, but I was also terrified of what would happen after the surgery. Would the pain actually be gone? After all, I still didn’t know exactly what was wrong with me. Would I immediately go into menopause with those horrendous hot flashes, night sweats, and mood swings?

My doctor explained to me that she would only take my uterus. This would be done laparoscopically instead of a vaginally. She explained that the laparoscope would go in at my belly button so they could view my abdominal cavity. There would be two tiny incisions on either side of my lower abdomen where she would insert two instruments that would remove small pieces of my uterus until the majority of it was gone. She explained that with this kind of surgery, the very bottom of the uterus just above the cervix would probably remain, and this very small part may still bleed, so I may still have some very light periods after the surgery. She did not want to take my ovaries since that would send me into premature menopause. I agreed to this type of surgery.

Even though my doctor explained all of this to me, I was still scared to death. Again, I didn’t have a diagnosis, so I wasn’t sure if this surgery would take away the pain or not. By this point in my life, I had many surgeries, so I kind of knew what I was facing – signing in at the desk, filling out all the insurance paperwork, waiting until the nurse called me back, getting into a hospital gown, having the nurse start the IV….and then that long wait. Just sitting there, waiting, with my family members. This was always the hardest part for me. My heart raced, and my stomach was queasy. The only thing different for me was that the nurse came in a put tight stockings on my legs. I asked why, and she said “to prevent any clots from forming in your legs”. This just added to my stress…one more thing to worry about.

Finally, the time came to go to surgery. This was always a time of relief for me. When they gave me the drug to make me drowsy, all the stress just melted away. I was suddenly so drowsy that I didn’t care what they did to me. Finally, my heart stop racing and my stomach settled. The stress was gone. Before I knew it, I was asleep.

When I woke up, I don’t remember feeling any pain at all. This was probably because I was so drugged up. I dozed on and off for a while. Next thing I knew, my family came in to see me. I don’t remember much at first, but gradually, I woke up. I still don’t remember much pain at all. A little while later, a nurse came in and removed my catheter. I was nervous, but I really didn’t feel much at all – it was quite easy. Later, the nurse asked me if I thought I could walk to the bathroom. I said yes, and I got up and slowly walked to the bathroom while the nurse walked next to me, holding my IV bag. I was able to urinate on my own without a problem other than being a little bit dizzy. Several hours later, I was discharged and sent home. I slept most of that day. I still don’t recall much pain at all. More than anything, I remember being a little weak and dizzy from the anesthesia, but I still had no problem walking as long as someone helped me.

The next morning, I got out of bed and walked into the kitchen where my mom was sitting at the kitchen table. She couldn’t believe how good I looked and commented over and over again about how well I came out of the surgery. I sat down at the breakfast table to eat, feeling pretty darn good. I was a little sore at the incision sites, but it really was minor. I ate breakfast, and a few minutes later, I had some abdominal cramping.

I need to stop here and give a little more background information on my ordeal with adenomyosis.

I had a retroverted uterus which means that it leans backward toward my bowel. During my ordeal with adenomyosis, one of the main symptoms that I had was excruciating pain with bowel movements during menstruation. The pain was so bad that at times, I actually had to crawl to the bathroom because of the pain. There were times I almost passed out from the pain, and at times I would end up vomiting. As my abdomen cramped, I would be unable to have a bowel movement. I could swear that at times, my bowel was obstructed from my adenomyotic uterus.

So, when I had this abdominal cramping after breakfast the day after my hysterectomy, I was really disappointed. It was the same type of pain that I had before the surgery. I thought that the surgery didn’t work, and anger, disappointment, and frustration just took over. The pain was fleeting, however. I went to the bathroom and had a bowel movement, and the pain dissipated rather quickly. Overall, it lasted maybe two minutes or so, and then I was back to my normal self.

That was the last time I had any abdominal pain! The last! I assume that this last bout of fleeting pain was a result of inflammation in that area as a result of surgery.

A few weeks later, I had a follow-up with my OB/Gyn. My mom was with me. She walked in to the room, sat down and looked at me. “Well,” she said, “I have some interesting news for you. The pathology report came back. You had a disorder called adenomyosis.” She also told me that I may have also had fibroids. There was some question as to whether or not the problem was all adenomyosis or adenomyosis and fibroids. I have since learned that adenomyosis and fibroids are commonly confused by doctors.

I was so happy to finally have a diagnosis that I sent roses to my OB/Gyn thanking her for finally giving me an answer. Months went by with no pain, and I started to realize that this whole nightmare was actually over. Hysterectomy was the best thing I ever did!

For about five years after the hysterectomy, I continued to have extremely light periods as my doctor had told me. The periods lasted one to two days only, but there was no pain associated with them. About four years after hysterectomy, I began to miss periods. I knew I was in perimenopause, but I was told that I wouldn’t be in complete menopause until I didn’t have a period for a year. My periods were sporadic for several years. Finally, my periods stopped completely, and at age 51, I am in menopause.

I did not take any hormones while going through the change. I had minimal discomfort during this time. I did have some sleepless nights, some night sweats, and some hot flashes, but all that was just annoying rather that really disruptive to my life. Adenomyosis was hundreds of times more disruptive that menopause. I would take menopause any day over adenomyosis. Of course, that’s just my experience. I clearly can’t speak for all women!

So, I hope that this blog helps to alleviate fears in women who are facing a hysterectomy due to adenomyosis. Although each woman has their own experience, my gut tells me that if you can get through the pain of adenomyosis, you should be able to breeze through a hysterectomy. In my life, I have had ten surgeries – ruptured appendix, adenomyosis surgeries, three back surgeries, and a coiled brain aneurysm. By far, the worst pain I have ever felt is from adenomyosis. The only thing that has come even close to this pain is my ruptured appendix. The back surgeries and coiled brain aneurysm were a breeze to me. Women with adenomyosis truly are some of the strongest women walking the planet. If you can get through the pain of adenomyosis, you truly can get through anything!

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Adenomyosis Treatments

Currently, the only treatment for complete resolution of symptoms is hysterectomy.  However, some progress is being made in the treatment of adenomyosis.  Check out the possible treatments below for more information.

Note: The Adenomyosis Information Network does not promote or recommend any of the following treatments. This information is given FYI so that you may be prepared when going through your treatment for adenomyosis. Please know that there can be side effects and/or complications from any of the treatments or medications below.

NSAIDS

Medications such as ibuprofen (Advil, Motrin) and Aleve are examples of NSAIDS.  These medications block prostaglandins such as COX-2 and have been shown to be effective with menstrual pain.  However, if the adenomyosis is severe, these medications may not be sufficient.  In my case, the adenomyosis was so diffuse and severe through the uterine muscle that these medications were ineffective.  If that is your case, you may want to talk to your doctor about stronger pain relievers and/or some of the other options below.

Progesterone cream

The use of natural progesterone cream has shown some promise in the treatment of adenomyosis.  Dr. John Lee has coined the term estrogen dominance and has developed his own natural progesterone cream.

Continuous birth control therapy

Using continuous birth control therapy can be very effective in treating symptoms of adenomyosis.  This involves being on the hormone pills continuously (no placebo pills during the week of menstruation) except about 4 times per year.  With this therapy, you will usually have about 4 menstrual cycles per year instead of once per month.  It is recommended that if this therapy is administered, a progesterone dominant birth control pill is used for the treatment of adenomyosis.

Progesterone (levonorgestrel)-releasing IUD

The levonorgestrel releasing IUD may be helpful in that it has been shown to reduce VEGF expression.  This device can be easily inserted and can last up to 5 years.  A speculum is used and a small tube is threaded into the uterus.  The IUD is placed into the uterus, and a small string remains in the vaginal canal so the doctor/patient will know that it remains in the correct position.  The patient may feel some discomfort after insertion including cramping and back pain.  Other side effects include possible pelvic inflammatory disease (PID) and pregnancy complications in case of IUD failure.  Benefits include lighter periods and a decrease in menstrual cramps.

Note: I regularly read comments on adenomyosis support sites and have heard from many women that they have had severe pain when using an IUD. I therefore feel compelled to pass this information on through this website. Although the literature reports that this type of IUD may be effective in reducing adenomyosis symptoms, there have also been actual patient reports of severe pain.

Progestogen tablets or injections

Danazol

This drug inhibits steroid hormone production, reducing estrogen secretion.  It may also increase testosterone production.  Side effects include weight gain, increased body hair, oily skin, reduced sex drive, hot flashes and an increase in blood sugar.

Aromatase inhibitors

Aromatase inhibitors are a newer class of drugs and are typically used for breast and ovarian cancer in post menopausal women.  Aromatase synthesizes estrogen, and these drugs block receptor sites for aromatase which in turn decreases the production of estrogen.  Examples of aromatase inhibitors include exemestone (Aromasin), anastozole (Arimidex) and letrozole (Femara).  Side effects include hot flashes, vaginal dryness, infertility, foggy thinking, muscle and joint pain, osteoporosis, arthritis, adrenal insufficiency, liver disorders, kidney failure and possible heart problems.

Gonadotropin-releasing hormone (GnRH) analogs

These drugs basically modify the release of lutenizing hormone(LH) and follicle stimulating hormone (FSH).  These hormones control ovulation and menstruation.  And example of this type of medication is Lupron.  It is given either by injection or intra nasally.  They have been used in the treatment of endometriosis, leiomyomas (fibroids), infertility, dysfunctional uterine bleeding, premenstrual syndrome (PMS), and hormone dependent tumors.  In one study, these drugs were linked with a decrease in the thickness of the myometrial JZ (see “Causes”).  Examples of GnRH analogs include Lupron, Synarel, Zolodex, cetrorelix (Cetrotide), and ganirelix.  Side effects include menopausal type symptoms such as hot flashes, vaginal dryness, headaches, mood swings, decreased sexual drive, and nausea.

Uterine artery embolization

This procedure has been shown in several studies to be helpful in the treatment of both endometriosis and adenomyosis.

The Osada procedure

Dr. Osada has developed a new procedure that help women with adenomyosis retain uterine function. This may be a viable alternative to hysterectomy.

Pentoxifylline

Also known as Trental or Pentoxil, this medication is typically prescribed for those suffering from intermittent claudication, vascular dementia or other circulation problems.  It improves blood flow throughout the body.  Some recent studies have shown that this drug may be promising in the treatment of endometriosis and/or adenomyosis.

MRgFUS

Another promising radiological exam that is actually able to pick up diffuse adenomyosis is now available.  It is called magnetic resonance guided focused ultrasound (MRgFUS).  This is so exciting to see a test that can actually pick this disorder up; however, my concern is that women generally won’t be able to access this technology due to cost and insurance requirements.  That is why it is so important for EVERYONE to be aware of this condition and to know that this technology is out there.  MRgUS is now being used in the treatment of fibroid tumors, but it is also effective in the treatment of adenomyosis.  It has been reported that 70-90% of cases will be picked up using magnetic resonance imaging (MRI).  Please educate everyone you know about MRgFUS!