Hysterectomy in your 20's ...

Hello, my name is Renee and this is my story ...

At the age of twenty-one, after the birth of my beautiful daughter Alyssa, I began to have serious issues with my reproductive organs. Now, understand that issues were not uncommon for me. I'd been experiencing minor issues with endometriosis, ovarian cysts, irregular menstruation, and pelvic pain since the age of fourteen, however, little did I know, the worst was yet to come. Six years after my daughter was born I finally got the relief I was searching for, but after a journey I found to be unlike any other. Today I am four weeks post-op a total abdominal hysterectomy and other than my surgical recovery I am pain free.

What I went thru was an ordeal I pray no other woman ever has to experience, so I'd like to share my story and opinions in hopes that my past can help save a lot of time, energy, and pain for others out there and improve their future.

Just a year after my daughter was born I began to experience severe pelvic pain, unlike anything I'd ever felt before. Because I was caring for a new born I let my own health take a back seat to caring for my baby girl and for several months after she was born I never even realized that I was no longer menstruating.

Once I realized what was going on I automatically assumed that there was a chance I was pregnant again, so I made an appointment to see my long time OB-GYN. My urine tests for pregnancy came back negative so blood work was taken and sent off for testing.

A few weeks later I was contacted and told that I was not with child, however, due to to lack of menstruation I needed to come back in for further testing. Upon examination my doctor concluded that additional blood work needed to be taken and that a menstrual cycle needed to be induced. In order to induce my menstrual cycle I was prescribed Provera (generically named: Medroxyprogesterone) which is a progestine used in hormone replacement therapy to prevent the lining of the uterus from growing too thick as well as to treat several other female reproductive issues. I was told to follow up in about two weeks.

After my first round of Provera I saw some light bleeding which was considered a menstrual cycle, however, I noted that it was much shorter than my cycle usually lasted. The Provera also caused me to have cramping that was much more intense, mood swings, as well as headaches.

Once the two weeks had past I returned to my OB-GYN's office and discussed the results with my doctor. At that time my doctor felt that the results were positive, that the medication had been effective and that the results outweighed the side effects I was experiencing. That's when I was told that if I didn't have a cycle the following month to make another appointment and return.

The next month I quickly realized I'd missed my cycle again, so back to the doctor I went. I was put on another round of the Provera, which seemed to be just as sucessful the second time around, however, this time I was then given a prescription for a one years supply and was told that if I noticed I wasn't cycling on my own to take another round of the Provera and to make sure I called and alerted the doctors office, which I did.

It wasn't until the third cycle of the Provera that I noticed it wasn't proving to be as successful any longer. On my own I couldn't menstruate, and now the Provera wasn't inducing a cycle either. I was baffled.

2007 proved to be a hopeful year ... In the beginning

I visited the OB-GYN regularly, I took round after round of Provera, Progesterone, and other hormones as well as steroids but saw little to no results. Now, at this point my husband and I had not ruled out having another baby so we wanted to try as many of the options that we could afford. We weren't quite ready for something as set in stone such as In-Vitro Fertilization or egg banking, but we still wanted to have options later on down the road. For this reason I tried everything I was told as far as medications and steroids, but something new was beginning to rear it's ugly head, my weight gain.

As most people know steroids and hormone issues can make you gain weight, so after a year of taking them month after month my weight had definitely increased and I began to have several other health issues. Migraines became an issue, and I found that I had very little energy and frequent mood swings.

Doctors visit after doctors visit I was now being told that I wasn't menstruating because I was over weight and obese; By the OB-GYN that had been seeing me since I was fourteen years old, the doctor that diagnosed me with ovarian cysts and endometriosis, the very doctor that told me she thought I'd never even be able to have children. This was very upsetting and because of this I felt that there was no hope.

Years three, four, and five were the hardest for me. By now I was experiencing pelvic pains on a daily basis, with increased pain and sensitivity on the left side (which is still a mystery). I'd just about given up on my OB-GYN when she decided to do a pelvic ultrasound. Because of this they discovered I had several cysts and polyps in my ovaries diagnosed me with Poly Cystic Ovary Syndrome (PCOS). I was put on birth control pills (Loestrin) to help with the pain and prevention of the cysts. As usual more blood work was taken and since my weight was now such an issue I was put on Metformin, also called Glucophage. It is normally used for the treatment of type two diabetes, usually in overweight and obese patients that have normal kidney function, but it can also be an effective tool in weight loss for some. At first I didn't really understand this, but after researching the topic and taking the Metformin myself I found that I wasn't as hungry, as often, and that my bathroom habits became very regular. However, I didn't lose too much weight, both my doctor and I were disappointed with the results, but I tried to keep with it. I ended up staying on the Metformin for years, as well as the Provera off and on. After all that time the lack of results took me to a place I'd never been before and started causing more issues than I’d ever had medically, emotionally, and physically.

I don't remember the date exactly but I think it was sometimes in mid 2009 when I'd decided my doctor wasn't really interested in helping me so I stopped going to my appointments. I’d already become depressed, my marriage was really taking a beating, and I felt like I was losing my mind. My darkest days had arrived and I didn't know what I was doing. I must admit I knew there was a problem but I had no idea how to fix it, and quite frankly, I wasn’t motivated to. Every day felt like some kind of challenge I was automatically set up to fail, no matter what. I eventually stopped sleeping most nights, I stopped eating properly, if I even ate at all, and I took a lot of what I was going thru out on my husband which lead to marital issues. Looking back on it now I don’t understand why I didn’t lose weight back then, considering what I was going thru, but my body has always been a mystery.

Eventually I hit rock bottom and was forced to try to find a way out of the hole I was in. My life was falling apart right before my own eyes and now, even my work was being affected. This was also when I realized that, in the end, my daughter was the one that could really be hurt and that wasn’t something I was willing to live with. So, I began to do research on my own.

As I researched what was happening with my reproductive health I discovered that by not going to the doctor and not getting testing on a regular basis, because I wasn’t having a menstrual cycle, I was putting myself at greater risk for even more terrifying things such as uterine cancer, endometrial cancer, endometrial hyperplasia, septicemia, and so much more. Even though, in the past, I hadn’t been presented with a solution to my menstrual issues I was at least being monitored so I was aware of what I’d be facing. Now, because I hadn’t been to the doctor I was terrified I could have something life threatening. This was the straw that broke the camel’s back, I decided to truly kick the depression and everything that came with it and made an appointment with my OB-GYN.

January 2010 ... I'd made an appointment to see my OB-GYN and decided that when I walked in there I was going to tell her like it was in order to get some real results this time around. I remember being really nervous because I was afraid I'd have to get an attitude with the doctor and that wasn't something I was used to doing, but if it would get something done I was willing to go all out.

When I walked in she acted as if she didn't know who I was, which was hard for me to believe considering she'd been seeing me since I was fourteen years old, she even delivered my baby. This annoyed me, but I kept strong. She listened to what I had to say and then of course went straight to "you're overweight" and let’s do the Provera, Metformin, and diet. I couldn't believe what I was hearing, I brought up all I'd researched and explained how my marriage was being affected as well as work. I explained that pain was too much to handle any longer, that I couldn't even have a regular sex life with my husband, and that something more had to be done. She seemed to hear me a little better this time and decided to take interest this time.

I went thru the regular motions, more testing, a pelvic ultrasound, blood work, etc ... They found the PCOS, told me I had endometriosis, and then hit me with news that I feared. Because I hadn't had a cycle in so long the lining of my uterus was overgrown. Cysts, polyps, and some kind of mass had developed inside the lining. I was diagnosed with Endometrial Hyperplasia and was told that my blood work had come back a little off. I thought I had cancer for sure, luckily I didn't.

After my appointment I had a lot to consider. The doctor had thrown around the terms DNC (dilation and curettage), tubal ligation, hysterectomy, and even uterine cancer. My husband and I even had to consider if we wanted more children, if the option of deciding something like that would even be a possibility. In the end we decided that the beautiful baby girl, the one I was never even supposed to be able to carry in the first place, was enough for us and that my health was more important. So, I made an appointment with the doctor just to talk about what we wanted. I sat in her office that day practically begging for her to just take it all out, for a total hysterectomy. My husband and I knew we didn’t want any more kids, she’d already told me that the chance and percentages of me getting cancer were substantially increased, and after years of pain I was ready for it to simply go away. Even after I burst into tears telling her my story she still decided that because she thought I was too young for a total hysterectomy she would do a DNC (dilation and curettage) to remove the overgrown lining of my uterus, a laparoscopic tubal ligation since we were sure we didn’t want any more children, and a hysteroscopy. She said that even if she was willing to do the hysterectomy she thought she would have a hard time getting it approved by the insurance company because of my young age, regardless of the severe health problems I was having, which I didn’t really believe. She further explained that she thought the tubal ligation (getting my tubes tied) would help with pelvic pain, that it could possibly help in the future with the insurance company if a hysterectomy was needed, and that the hysteroscopy (inspection of the uterine cavity by endoscopy with access through the cervix) would possibly give her some insight as to what the mass in my uterus was and what was causing the pain. The procedures were out-patient and the recovery time was hardly anything.

The mass that was removed was not cancerous, thank God, and my ovaries appeared to be in ok shape, but there was nothing more found that could explain the severe pelvic pain I’d been experiencing other than the polyps and cysts in the uterus which were also removed. My doctor told me to come back for a follow up and yearly exam in three months, she wanted to see if I’d started menstruating on my own, and to see if the pain had stopped after the DNC. She told me that since I’d had the tubal ligation, if the pain was persistent, that she would do a hysterectomy because it would alleviate the pain and would more likely be approved by my insurance company; even with factoring in my young age.

Three months later I was back in her office, still in pain, still not menstruating. I remember she walked in, as usual, acting as if she had never seen me before. As always, I felt like I had to remind her of everything that had happened in the last three months and of our conversation in her office about the hysterectomy. That visit she did my yearly exam, I left her office, and never went back.

It was almost a year before I got up the nerve to find a new gynecologist. I was referred to a physician by my Aunt that had, in recent years, performed a hysterectomy on her after detecting a tumor in her uterus that had been missed by previous doctors.

As soon as I went into her office I knew I'd made the right decision. She listened to what I had to say and it was clear she wanted to be proactive since I felt my health had been previously neglected. She immediately set up a pelvic ultrasound and had blood drawn. The date was July 07th, 2011, the day I met the doctor that I truly believe saved my life.

A week later I was back in her office going over test results. She made it clear to me that again, just one year after my DNC, the lining of my uterus was too thick, even thicker than before, and that I since I'd already been diagnosed with Endometrial Hyperplasia the risks of life threatening illness was significantly higher. The pelvic ultrasound also reviled another mass in my uterus as well as evidence of polyps. With my history and the pain I was still experiencing she thought this was very concerning and scheduled for me to come back in the following week for a biopsy of the mass. The next week I had the biopsy as well as a Pap smear and was told to return in two weeks for results.

A week after the biopsy I was called back in, the first Pap smear that was done came back inconclusive due to insufficient living cells. So, another Pap smear was done. The next week I returned for the results of my tests and found that the second Pap smear had also returned inconclusive due to insufficient cells so a third one was done. I was also sent for a CAT Scan (CT) with and without contrast to see if there was anything else going on in my abdomen that could be causing pain and more blood work was done, third time including a liver function test.

Close to two weeks later I returned to find out that my Pap smear had finally come back and was normal, which was great news. The biopsy had come back non cancerous, which was even better, and the CAT Scan had turned out ok, other than my slightly enlarged liver. Because of the pain, how long I’d been living with it, and my medical history my doctor made it clear to me that a hysterectomy was necessary, that she believed that it was the best treatment option.

On September 13th, 2011, at the age of twenty-seven, I had a total hysterectomy. Meaning my uterus and cervix was removed but my ovaries were left; so that I wouldn’t have to go on post menopausal hormone therapy. It truly has been the best thing that has happened for me in years.

Presently I am about four weeks post-op and already feeling better than I have in a very long time. Other than the surgical recovery, so far, I am pain free. I am happier, I’ve began to notice I’ve lost weight, I have more energy, and I feel more like myself. Although I’ve heard that some women say that after a hysterectomy they no longer felt like a woman I have to say that I feel completely opposite. My husband has noticed significant changes as well as my family and even my, now, seven year old daughter.

No one really knows why I stopped menstruating after my daughter was born. I was at a healthy weight, before all the steroids, and even though I had to have a cesarean (c-section) everything seemed to go well. What I have learned is that the body works in mysterious ways and sometimes things can’t be explained as we’d want; however, today I am happy to be alive. To be cancer free, pain free, and to have such a caring and patient family. Over the years they have put up with a lot from me, got me thru many hard times, and even when I was ready to walk away they stood by my side. I am truly blessed and grateful for everything we’ve got and ready to help others. Others that may be going thru something similar to what I’ve experienced, or someone that might just be going thru something and they need a little encouragement. That is why I am sharing my story, so what is yours?