Cheryl's Severe Endometriosis
Dear Amy,
My name is Cheryl. I am in desperate need of help. I am a young, physically fit 20-year-old female with a serious situation and no one to help me. I am writing you in search of answers and comfort in knowing I am not alone.
I have searched high and low for answers to my diagnosis of ovarian cysts, but I have found nothing--then I found your story and realized we are strikingly similar. This is my story--maybe you can help.
I was 19 when I began to notice something was "wrong." I had recently moved from New Jersey to California to be with my then boyfriend. We didn't have a good relationship to begin with, and moving 3000 miles away from my friends and family to be with him probably wasn't the smartest thing I have ever done. Only weeks after moving out there, I began having spotting in my underwear, and went to a gynecologist for answers. She suspected it was the stress of moving, but performed a pap smear to see if anything was wrong. Lo and behold, the test came back a Stage II, meaning I would have to be retested in 3 months and if the stage did not change, I would need to have a biopsy. I had a breakdown, thinking I was going to die of cancer, dumped my boyfriend, packed my bags, and headed home.
Three months later, I had my second pap smear--again it was a Stage II. The doctor in New Jersey performed the biopsy and sent me home. I was told I had HPV and that I needed to be monitored for six months to see if the situation worsened. If it did, as was explained to me, I would need to have a part of my cervix removed. I asked the gynecologist about the spotting in my underwear, and the doctor said that my cervical situation would not affect my period. She also gave me the lecture that every woman's body changes and I should not be concerned if my period was askew--it would return to normal. Two months later, my period was back and on a steady cycle, only it had become more painful.
I returned to the gynecologist in February of this year for my six month check-up on my cervical diagnosis. The doctor noticed a change, but felt it was in my best interest to "wait a few more months and see if it changed again." I was not happy with that solution. In my opinion I had waited long enough, and I wanted the bad part of the cervix removed already! I also explained that my period had not come yet. She did a pregnancy test (like I hadn't done 50 by that point) and found that I was not pregnant. Again, she told me that every woman's body changes bull. I was not satisfied. I explained that I knew something was wrong because sex was becoming increasingly painful, bowel movements hurt, and my left leg was killing me. So upon my persistent nagging, she did an ultrasound to see if I had a cyst. The test was negative, so she diagnosed me with endometriosis. She wanted to put me on the Pill. I do not believe in the Pill, and I did not like her answer that I had endometriosis without performing any tests, so I went for a second opinion.
My second doctor saw me the first week in March. It was to him I explained my pains, my cervical problem, and my qualms with the other doctor not doing anything to solve my problems. He decided to take a look, run a pap of his own, and deal with the cervical situation first. He explained that the pain was (again) just a woman's body changing. After my pap came back with a Stage III, he decided to go in and remove the bad part of the cervix. The procedure was done in his office after two long weeks of waiting. It was during the procedure I experienced severe pain, and screamed when he tried to conduct the vaginal test. He was concerned at that point and sent me to a radiologist to have an ultrasound performed. The ultrasound revealed that I had a cyst (5.5cm).
I spoke to my doctor that evening, worried I was going to die, and he put me on birth control to shrink the cyst. Two days later I awoke covered in blood, and in pain. I thought that I had finally gotten my period--it had been two months since I had seen any blood. The only problem was the color. It was bright red, and I know my body enough to know it wasn't period blood. I called the doctor to find out what was wrong. He had me meet him at the emergency room. It was there the doctor explained my cervix wasn't healing right and that it needed to be cortorized, so that is what they did. The next day, I noticed blood in my urine, and again, I called the doctor. This time I went to his office. Diagnosis--bladder infection. Two more days of bleeding . . . called the doctor from work. I was in pain! He had me go to the emergency room again. Finally, the bad news. All of the diagnosis' were wrong. I had a ruptured ovarian cyst (6cm) and needed emergency surgery.
After a month of recovery (now it is the end of April), my fiancee and I decided to have sexual intercourse for the first time in months. My doctor reassured me I was fine. The intercourse hurt immensely, and I called the doctor the next day. He told me I was fine. Statistically, I couldn't have another cyst because I was on the birth control, he had checked my ovaries during the surgery and nothing aside from the ruptured cyst was wrong, and the pain was "normal." Weeks went by and my pain spread to my leg, this time my right leg. I was sure I had a cyst. Last week I went to the doctor, convinced I was right, and so he sent me for an ultrasound. Guess what?! A cyst (4.5cm). I was admitted to the hospital after much nagging to get the damn thing out of me and on Thursday and it was removed via laparoscope.
This is my problem. I have scars all over me and no answers. I have a scar from hip to hip from the emergency surgery, a scar on my stomach from the laparoscope, and stitches in my bellybutton from the laparoscope. I can't seem to find any information about any of this though. Why did I get a cyst in the first place? Why the second one if I am on birth control? What is the likelyhood I will get this again? Does this affect my ability to have children? What if it happens again, do they just keep opening me up and taking them out, or do I have to have a hysterectomy? Why is this happening to me when I am so young and in such good health otherwise? I have all of these questions, and I can't get answers. I have tried to talk to the doctors about this and they don't give me any answers, so I am looking to you. I hope you know where I can get more information on my problem, or maybe you yourself have answers. Please contact me as soon as possible if you can help. I am running out of patience, and hope.
Thank you so much for taking the time to hear my story. I just need someone who understands what I am going through.
Sincerely,
May 2001
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Dear Amy,
Thank you for wanting to post my story on your website. I am flattered! I need my story to be heard in hopes of helping others through similar situations. I wish I could update you with a positive prognosis, unfortunately, much more has happened since my last letter.
After having been diagnosed with ovarian cysts, I thought the worst was over. Now that a diagnosis had presented itself, I was hoping the doctors could help me cure the disease. I was wrong. At the time of my letter to you I had seen 4 doctors, and finally reached the conclusion that I had ovarian cysts. In the care of doctor #4, I looked for answers. His solution was birth control to shrink any future cysts - I did not agree. The birth control pill had not worked in the past, so I refused to take the medication and found doctor #5. My pain was unbearable. It encompassed my legs, abdomen, and lower back. In the care of doctor #5, I had yet another surgery. He labeled it "exploratory surgery" to get to the root of the pain. He felt that "cysts do not cause pain," so it must be something else. Following his surgery in September of 2001, he said I had yet another cyst and some abdominal scarring. After a long recovery, I still felt very sharp pains and nothing was helping. By December of that year, I was in and out of the emergency room with debilitating pain. I was diagnosed with everything from appendicitis to post traumatic stress syndrome.
By the end of December, doctor #5 reported to the emergency room via phone that I must be a pain medication junkie, a drug addict. He told the hospital that nothing was wrong with me, it was all in my head, and I concoct this "pain" to gain attention. I was contacted by his office with a referral to a psychiatrist. That was the last I would ever hear from their office--and I was glad. Emotionally, the years of pain were ruining my spirits, my sex life, and my ability to lead a happy, healthy lifestyle. And now I was labeled a nut. I could not bear much more. I went to 4 more doctors--a gastroenterologist, a fertility specialist, an orthopedic specialist, and the leading (!) physician on ovarian cysts. Nobody could answer the question,"Why do I hurt?" I began to think I was insane! During this time I planned my wedding, hoping I would feel better if I had something to look forward to. May 4, 2002. I couldn't wait.
Sex was so painful. I couldn't take the penetration without crying heavily. I couldn't drive, touching the pedals was too painful. I couldn't stand or sit too long, I would cramp up and collapse. And I was not getting regular periods. I met with another gynecologist, doctor #? (I saw too many to count). I went with the notion that I would not bring up any gynecologic problems unless asked - I couldn't bear the label "Nut Case" again. I told him I wanted a routine PAP performed in order to verify that my cervical dysplasia had returned to normal. In the past year, I had had 2 cryo therapies performed to remove the dysplasia. With this doctor I found out that the situation had only gotten worse. He decided to perform an outpatient procedure in his affiliated hospital with a laser. I decided to fill him in on my nearly 2 year journey to cure my pain. He decided another "exploratory surgery" was needed.
I canceled my wedding and went in for surgery in April of 2002. Once I awoke from my anesthesia, I had a true diagnosis. Not only did I have cysts, and scar tissue damage, I had endometriosis. Stage IV Severe endometriosis. All I could think was, "I am not a NUT!!!" This doctor said it appeared to have been there for quite a few years, which made me want to call ALL the other doctors and laugh in their face. I thought I was finally cured. The disease had so ravaged my body that I was one big ball of disease. My bladder had folded in half and glued itself together with endo. My intestines were stuck together with endo. My kidneys were stuck with strings of endo to my abdominal wall. My ovaries and fallopian tubes were attached to the abdominal wall. I had a vein in my leg so covered in endometriosis that it was as thick as a magic marker. The endometriosis was invading my entire reproductive system! . This is why I hurt.
The doctor could not remove it all, and I still have quite a bit of pain. I have good days and bad ones as well. But I have a diagnosis. That is all that matters. I was given three months to try to conceive a child on my own--if I can't, I need to go to a fertility specialist right away. I was told the endo is so bad it is invading the ovaries and fallopian tubes at an alarming rate. My life is going to be filled with surgeries and pain--that we know. I can have a radical hysterectomy after I have children, but they can't guarantee the endometriosis will stop forming.
I wish I could write that this is the end of the story - that I have a diagnosis and all is well. But I feel this is only the beginning.
Amy, I would love for you to post this to your website. I feel it is in the best interest of all women of all ages to hear my story. They need to know that this can happen to anyone at any age. My situation is atypical to say the least, I am a one in a million case, truly. But if I am the worst case scenario then maybe someone else will feel better knowing that things aren't really as bad as they could be! Please include my name and email address so that others can relay their stories and direct their questions to me. At this point, with all I have been through, I have studied so much and purchased every book on the market, making me a leading authority on women's health!
Thank you, again, for reading my story. It means so much to me.
Sincerely,
May 2002
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Amy - I have enclosed a copy of a letter I sent to Kelly, a girl from Australia who contacted you and I recently. If you would like, you can post it to the website as an update on my situation. I am now married with a very healthy 8-month-old daughter. I wish I could say that my condition has improved, but it has not. Cheryl
Dear Kelly,
My name is Cheryl. I am 23 years old and live in the United States. I understand your pain in more ways than you know, and I will try to help in any way that I can. I have battled endometriosis for over 3 years (severe stage IV) and have had moderate endometriosis since I was 13. The difference being that from age 13 to age 20 I would get my periods with severe pain, sometimes vomitting, and most lasting at least 7 days. Since age 20, I do not get periods on a regular basis, suffer from severe abdominal pain, nausea, cramping, and back pain.
This is what I have done to cope. I visited doctors for many years and battled the constant, "you are a woman, and women get their periods" comments, the "it's in your head" comments, the "we don't see anything in your bloodwork/ultrasounds, you're fine" comments. I had to go from doctor to doctor to find someone to help me. I was always having pain, and didn't have a clue as to why. I now know I have severe endometriosis, and I also know I have sensitivity to ovarian cysts. But that literally took years and 4 surgeries to find out. As I said before, I know your pain, and I wish I could tell you I was all better, but I can't. After my last surgery in 2002, I was told I would need a hysterectomy due to not only cysts and endometriosis, but, like you, I also have stage I CIN (cervical cancer cells). I was not ready for that being that I am so young and hadn't had a child. I was given the option of trying to get pregnant, which I tried--my husband and I had to use in vitro fertilization. We were able to get pregnant and, although it was a very rough pregnancy, we have an 8-month-old baby girl now, and she is beautiful and healthy. We had hoped that after my daughter was born that the endometriosis would disappear, but it didn't. I have since tried using a drug in the US called Lupron. It is very controversial and dangerous, and in my case, it didn't help. I stopped the Lupron treatments last month and I still suffer from much pain. I take pain killers for the constant cramping, and battle bladder pain, intestinal pain, and much more. The ways that I deal are with rest, heat pads, and lots of help with my daughter from family and friends.
I know that you want to work a full-time job, which I completely understand, I was the same way. Unfortunately, with people like us, working is hard because each day brings more pain. I have a flexible job - meaning, I work when I can and the hours that I can. It helps get me out of the house, brings in some money, and allows me time off if I am not feeling well.
As far as future treatment, my husband and I are looking into in vitro again, having one more child within the next year, and then I will have a hysterectomy. I know I am young, but I want my life back, and I am sure you feel the same.
Some of my suggestions . . . first, find a doctor who understands. I went through about 20 doctors looking for someone to listen to me - I finally found one, but only recently. Find a doctor who is not afraid to help you. If pain medication is what you need, or you need more surgery, or you want tests performed, insist that the doctor listens to your requests. If they don't, move on to someone else. Try researching Australian specialists. I found a specialist in New York City who dealt with ovarian cysts, he helped me understand that I am highly sensitive to the cysts in my body no matter what the size. His findings help my current doctors know that when I have a cyst, it needs to be watched carefully in order to control my comfort level. I would also contemplate some of the medications on the market. You may have access to Lupron, and if so, try it. It is a drug that puts you into menopause (in a sense), but in most people (not me, but maybe you) it stops the endometriosis from spreading. Do not freak out about the cervical cancer cells. Ask your doctor to perform a LEEP - it is a procedure where they remove a layer of your cervix. I had it performed after many, many other treatments (about 15 in all) failed. The LEEP, so far, has worked. Also, regarding the HPV - you should have your husband or current partner checked for sexually transmitted viruses. My husband had to go through extensive tests to rule out that he hadn't become a carrier of the HPV virus. If he had been a carrier, he would just be giving me the disease again and again after intercourse. His tests were negative, but in your case, maybe your sexual partner is the possible cause of your viral infection. If your partner is the cause, treatments are available, and it should clear up your cervical problems. But insist that your partner do follow though with testing, it is for your health and it is necessary.
I would love to help in any way that I can. Please understand that we are a select few on this earth who know what this disease can really do to a person's quality of life. If you need more information, want to ask more questions, or just need someone to talk to, email me. I am always here for anyone who is going through what it is that I am going through.
I hope to hear from you soon. Count your blessings that you have a healthy child, some people in our situations can't ever have children. We are lucky that we got that much out of our substandard lives.
Take care,
March 2004
Amy and Richard Goerwitz
Amy@Goerwitz.com
Richard@Goerwitz.com