Empty ArmsAn Endometriosis and Infertility Websiteby Jenny (Soloski) Hoppe |
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Empty ArmsAn Endometriosis and Infertility Websiteby Jenny (Soloski) Hoppe |
|
This is my endo story, and it is very difficult to write. It is hard once you get past a certain point in your life to go back and analyze it. But I've learned that the only way I can get through this is to talk about it. In addition to spreading awareness about Endometriosis, it is my hope that I can help you to know that, if nothing else, you are not alone.
If you've already been to this page, please Click Here to read my updates.
Ever since I was about 14 years old, I had frequent and severe abdominal pain throughout the month. Every month it was the same thing: severe cramping that was so bad I could barely function. All throughout high school this continued. Every few months I'd end up in the local emergency room. They would do the usual tests: urine analysis, ultrasound, pelvic exam, STD screen, pregnancy test. The problem was that every test they ran came back normal. One doctor told me that my monthly cycles were a "natural event for all women". He then gave me a prescription for Tylenol and told me to "toughen up". And I actually had one doctor tell me point blank that the pain was "all in my head" and he gave me a referral for a local psychiatrist.
In March of 1991 at the age of 17 I had my first diagnostic laparoscopy. A laparoscopy is when they take a long narrow tube (called a Laparoscope) and insert it thru a tiny incision in the belly button to get a good look at what's going on inside of you. The results of my first laparoscopy showed that I had mild Endometriosis. My doctor said I had a small amount of Endo on my uterus, touching the tip of my tail bone. The doctor said he had used a laser to remove the Endo and that sometimes it does grow back. He told me that one of the effects of Endo was infertility, but that since I had such a small amount and was so young that I should not have to worry about it.
I got married in November of 1991. I spoke with my husband to be and told him before we married that I had some medical problems & there was a possibility that I might not be able to have children. At that time, I fully believed I would get pregnant soon after we married, but I felt that he had the right to know. He told me we would deal with that if it happened.
Our 1-year wedding anniversary came & went, with no baby. I became very depressed. I thought that when you get married, you get pregnant. All my friends were having babies. I just kept thinking "what is wrong with ME?". The abdominal pain during my monthly cycles was still very bad. Due to lack of medical insurance, and fear of what they might find if I did go to the doctor, I kept putting off another doctor's visit.
After another year passed, I was very concerned that I had not gotten pregnant and was still having abdominal pain. I had just started receiving my health benefits through work and started going to a women's hospital in Pittsburgh. They ran all kinds of tests: blood work, ultrasounds, and an endometrial biopsy. All of my tests came back normal. They said I may still have the Endo but they did not want to do another laparoscopy. What the doctors did explain to me at that time was that there were some cases when a woman with Endo does manage to get pregnant, that it reduces the amount of Endo & makes additional pregnancies easier to conceive. So they decided to put me on what they called "an artificial pregnancy". They put me on a high dosage birth control pill. I was to take the pills for 9 months during which time I would not have a period & my body would 'think' it was pregnant. I took the pills for 3 months, and when I went in for my check-up I had gained 20 pounds! I was so upset. I asked the nurse if I would lose the weight after the 9 months, and she said "No honey, you're not really pregnant". I went home & threw the pills away. My next doctor's appointment, they prescribed me Codeine and told me that I was just trying too hard, and that if I quit thinking about getting pregnant, it would happen.
For the next few years, every month, it was the same thing. I kept track of my periods on a calendar. I figured out when I would ovulate each month. I took my temperature every morning. If my period was 1 day late, I ran out & bought a pregnancy test. Every month it turned out the same. Negative. (Thinking back, I should've bought stock in the pregnancy test company!) Then I started reading books about how to get pregnant. We tried every position in the world, and afterwards I'd stand on my head hoping those little fishies would find their way! (This may sound funny but I was getting that desperate!)
All I could think was: why me?? What did I do to deserve this?? Women are not brought up with information about infertility. Women (at least where I come from) were brought up that you get married . . and have babies. Simple as that. And all the time I was so desperately hoping to conceive, there were so many other women popping babies out left & right. So many women are aborting babies. So many women are VERY bad mothers. WHY is this happening to ME?? I would make a good mommy, at least in my opinion. I wanted nothing more than to be able to give my husband a child.
In February 1994 I found out my sister was pregnant. She is 18 months younger than me. At first I was so devastated. But I realized that my inability to conceive should not deprive my sister of her excitement. I decided that I wanted to live her pregnancy with her. I wanted to know what it felt like, could she feel it kick, etc. My sister, however, would not tell me anything. I later found out that she felt uncomfortable talking to me about it. This made me feel bad, although I could understand her hesitation. (By the way, I now how have a beautiful niece named Carly who I love dearly!)
In early 1995 we moved from our hometown, Kittanning, PA, to Mesa, Arizona. Once we got settled in to our new surroundings, I started seeing a new doctor in Mesa. She put me on birth control pills (sigh). I went to see her once a month to get checked. By this point, my pains each month were more severe. Worse too is that I was also experiencing sporadic pains between my periods; it felt like someone was punching me with a sharp object from inside. Also, before each period my abdomen literally swelled to the point where it hurt to sit down, it hurt to stand up, it just hurt. The only way to describe it is that it felt like my inside organs were bruised & swollen.
Later that fall my doctor referred me to a gynecologist (finally!). After this new doctor read my file, he immediately scheduled me for a diagnostic laparoscopy (surgery #2). This lap revealed that I had severe endometriosis, that my fallopian tubes were so clogged that I would never be able to conceive naturally, and that I had severe adhesions on both ovaries. How had this been missed?? I had no idea how all the other doctors missed all of that.
One of the things I have since learned is that the ONLY way to definitively diagnose Endometriosis is via a laparoscopy, which is a simple outpatient procedure. Blood tests, x-rays, urine tests, etc. will not tell you or your doctor if you have Endo. If more doctors would have listened to me when I said I was having these chronic, constant pains, maybe I could have been treated sooner before all the damage was already done. But they were too busy shrugging me off & telling me that my pain was all in my head.
On March 6, 1996, I had a bilateral salpingectomy. That is: complete removal of both fallopian tubes. The doctor tried to remove the fallopian tubes by doing yet another laparoscopy but the tubes were so damaged that he ended up having to cut me. I had an abdominal incision above the hairline. It took about 6 weeks to recover.
THIS was the surgery that did me in. I now realized that I would never conceive a child. Something that comes so naturally to so many women, and even plants and animals, and "I" could not do it. I was informed of options such as IVF - In Vitro Fertilization. The doctor told me that with the medical problems I had in the past that my chance of ever carrying a child to term was less than 30%. My husband & I decided we did not want to do IVF; I don't think I could have dealt with it emotionally if it didn't work. I felt it was too big a risk, financially and emotionally.
You know the worst thing about not being able to have a baby, is that everyone says Oh you can still adopt can't you? And you know what, someday I may adopt. I truly believe that I could love any child as my own, whether I conceived and carried it in my womb or not. However, comments like this always made me cringe, especially at this point in my life. At this point in time I felt adoption would just not be the same. I wanted to feel a baby grow inside of me, and I resented every single person who made this comment to me. The other comment is I know what you're going through. I heard this a lot from my mother and also from my mother-in-law, both women who I love dearly. However, they do NOT have a clue what "I" am going through! This is coming from women who already have borne children. How could they possibly know how "I" am feeling. Answer - they don't. And I know they were only trying to help, but at the time I really resented hearing people tell me this. There's a saying that misery loves company. I don't know that misery "loves" company, but it is nice to be able to share your deepest troubles with people who do understand and have been there.
I enjoyed approximately five months of being pain free after this surgery. But by the end of August, the pain was back and was worse than ever. The doctor who had done the salpingectomy had retired (figures) so I went to a new doctor. This doctor told me I had 'chronic pain syndrome' as a result of all my abdomen had been through. He prescribed Zoloft for me. He said it was an anti-depressant but it would stimulate my brain into 'thinking' I was not hurting. This probably sounds confusing, and honestly it sounded confusing to me at the time, but that is what he said. So now we have doctor's who want me to 'cover-up' the pain. (Sigh)
From September 1996 - June 1998, I suffered every single month. I experienced such painful ovulation that I could tell you the exact moment I was ovulating. My periods were not only painful but I began to experience migraines and PMS from hell, and having sex with my husband was completely out of the question. There is nothing worse than ending up curled in the fetal position and crying after intercourse. I didn't enjoy that and of course my husband didn't either!
During this time period I went to at least 4 different doctors. One doctor told me that because I had a history of Endometriosis that I should never have surgery again unless it is life or death. Another told me it was 'all in my head' (I wonder if they teach these doctors to say that in Medical school??). Another gave me a prescription for Codeine. I tried to tell him that Codeine never has helped the pain but he refused to listen.
The last doctor I saw in June of 1998 was wonderful. He read my file (by this time I had copies of all my medical records & took them with me to the doctor visit). After reading my file he ran the normal tests (HMO dictated of course) which included some blood work, and an ultrasound. Both came out normal. He gave me several options. He said that I could try birth control pills (again), that he could do a laparoscopy to see exactly what was wrong inside of me, or he could a hysterectomy.
I spoke with my husband and we decided to do the hysterectomy for several reasons. First, we thought that 'no more periods' would eliminate the biggest part of my problem. Second, the doctor said if I didn't have a hysterectomy now that I would need one within the next 10 years anyway. He said he was assuming it was Endometriosis and even if he went back in to do a laparoscopy every year, they'd end up removing me bits and pieces at a time - an ovary this time, a cervix the next, etc. We decided we did not want to put me through more surgeries than necessary, so just take everything out & get rid of the pain. Because I had the bilateral salpingectomy 2 years ago, the sterility that comes from a hysterectomy was not a big issue at this point. I just didn't want to keep having surgeries and having bits & pieces of me taken out each time.
On July 7, 1998, I had a total abdominal hysterectomy. They removed my uterus, cervix, and left ovary. The doctor said that the Endo was so bad that it had adhered my organs together. He also said I had a cyst (where did that come from??!) on my left ovary, as well as Endo & adhesions on all the organs which he removed. My right ovary was relatively clean; he said by leaving it I should not have to go on hormone replacement therapy (HRT).
After a 2 day hospital stay, I came home. Other than the typical surgery pain, I had NO abdominal pains! My period was due to come the last week of July and YIPPEEE I will never have one again! The only problems to speak of is I had massive hot flashes, so my doctor has started me on HRT (Hormone Replacement Therapy). The pills he gave me first caused severe migraines so we are now experimenting other options.
August 8th, 1998
I wanted to share some thoughts of what I have learned from my experiences.
** Do NOT accept it when a doctor tells you that your pain is "all in your head". YOU know your body, you will know if something is wrong.
** Do NOT let your pain get the better of you. Do research at your library or on the internet. Find out what could be causing your pain and what different options are out there for you. There is a TON of info on the net regarding endometriosis.
** Any time that you have surgery, get a copy of the surgical report. It may tell you more in depth what was done to you than what the doc tells you. (For this one I had to get a medical encyclopedia to figure out some of the terms.)
** Regarding infertility, it is NOT your fault! This was and still is a hard one for me to accept. There's that little part of my mind that goes over every little thing I've done in my life, trying to figure out what I did that I am being punished for. Nobody is punishing you. Nobody is punishing me. As hard as it is to accept, it is just life. And believe me, I know, it sucks, but in some way, shape, or form, it can only get better from here!
I'm now 2 1/2 years post op from my hysterectomy and the pelvic pain is back. A recent trip to the doctor discovered I have severe adhesions due to the number of surgeries I've had. The doctor refuses to do anymore surgery since it'll create more adhesions. At this point I'm doing massive research on adhesions and trying to figure out what to do. I do not know for certain if the Endo is back, but about once a month (probably when my periods would have been), I'm in pretty bad pain and it feels EXACTLY like it did before my hysterectomy.UPDATES:
January 18, 2001
August 21, 2002
April 29, 2003
August 3, 2005
*** UPDATED January 18, 2001 ***
Some of you have emailed me to ask: "If you had to do it all over again, would you still have had the hysterectomy?" My answer is honestly, I don't know. There are so many variables. I did get at least 2 years completely free of the pain. But I'm trying not to dwell on "should have" type questions, I want to just deal with the situations as they happen and go from there.
On a more personal note, I did get divorced as of the spring of 2000. I'm currently living in Wisconsin with my soul-mate/husband John, my dog Lucky, and our newest addition, our cat Storm.
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I went to the doctor in May of 2001 and was now told that I *probably* have adhesions, and that I *probably* have Endo. The doctor (as stated above) refused to do any surgery. She gave me Ibuprofen & pelvic exercises. Believe it or not that appeared to work for roughly 3 months. Then the pains came back with a vengeance.
It seems that every 3 months I have severe lower back pain. I also have pain in the right side, above the appendix but below the rib cage. They keep doing chest x-rays & ultrasounds which always come out normal, so I quit going to the doctor. I can only take so many times of being told "well all your tests are normal" before tossing in the towel.
Unfortunately, pain doesn't go away just because the doctors can't find it. I actually had to re-read my own tips in the above story to kick myself into gear. Since May I've had several serious outbreaks of lower back pain, that was almost incapacitating at times. The right side pain is getting worse. And to top it off I'm now dizzy very frequently throughout the day. And last week my right ovary began to hurt. Most women don't even know exactly where their right ovary is, but trust me this was definitely right ovary pain. And it felt too similar to Endo to ignore it. I do not know if these problems are all related, but it seems to me to be too much of a coincidence. I do have an appointment scheduled September 10th with a new gynecologist. I am going armed with as much information as I can about Endo and I just hope & pray this doctor will listen to me. I intend to request a lap so that I will know "for sure" what I am dealing with. I'll post it here after I visit the doctor.
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I did find a local doctor who believed that the simple fact that I was diagnosed in the past with Endo means that I still have it. There is NO cure for Endo. This doctor refused to do a laparoscopy, saying that after all the surgeries I'd been through that any additional cutting would lead to more adhesions which would only make it worse. His solution was to treat me with a drug called Lupron. Lupron is a hormone which would shut down my remaining ovary & put me through instant menopause. He said if the drug worked, it would help treat the Endo pains and also we would know for sure that it was definitely Endo, without having to do any invasive surgeries. I took the Lupron injections through most of the winter, and let me tell you, menopause is not fun!!!I had hot flashes, mood swings, night sweats, mood swings (yes I know I mentioned that but they were so bad it is worth mentioning twice). Needless to say, the pelvic pain did completely disappear for the few months that I took the injections. However, the side effects (hot flashes and mood swings mainly) were so bad that I quit the injections after 4 months.
The bottom line is, I still have Endometriosis. It will never go away. My only option seems to be to find a pain management clinic to regulate the pain. Luckily the pain is not constant as it was before the hysterectomy. However I do not feel that in this day & age of medical technology that I should have to "manage" my pain. I want a cure. I know thousands of other women who are suffering with Endo, and the families of those women, they all want a cure. We won't get there when most people don't even know what this disease is.
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I should have updated this sooner but as they say, life got in the way. I saw a doctor last November who put me on a combination of 20 mg of Amitriptyline and 100 mg of Zoloft. Yes those are both anti-depressants. But within a month of taking the pills regularly the pain was gone. I can honestly say I've had no pain since December 2004. Since I'm pain free I was able to finally lose some weight. As anyone knows, when you're constantly in pain its extremely hard to be up and moving around. So I'm pain free, and lost 50 lbs.
In an unrelated story, I went to have some moles removed at the end of December, 2004, and found out that one of the moles on my back had melanoma. I had never heard that word before. Melanoma is malignant skin cancer. The size of the cancer was 1.01 mm which sounded small to me. But apparently any melanoma that is larger than 1.00 mm requires surgery to make sure it hasn't spread. I underwent surgery in January to remove a good portion of skin from my back around where the mole was. They also removed some of my lymph nodes in the groin area. The 2 days I waited for my results were the longest 2 days of my life. Thankfully, the melanoma had not spread. For the next few years I will need to follow up with a dermatologist and also have blood work and x-rays done on a very regular basis. I am extremely thankful that they caught the melanoma early enough and that it hadn't spread. I was not high risk for skin cancer so I don't know how I got it.
Anyway, life is fairly good now. I just try to live each day to its fullest and pray that it continues to stay that way. Please email me if you have any questions about Endometriosis or malignant Melanoma or if you just need to talk. Jenny - ariesjenjen@yahoo.com
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To learn more about Endometriosis, please visit: The Endometriosis Association
To learn more about Malignant Melanoma, please visit: The Melanoma Research Foundation