Endometreosis is a serious disease that affects more than 5.5 million girls and
women in Canada and the U.S., yet many sufferers go undiagnosed. That is one
of the most distressing parts of this disease is that it often takes women
years to get an accurate diagnosis.
The pain and discomfort associated with Endometreosis can range from mild to
severe and debilitating. Symptoms include pelvic pain, infertility, fatigue,
exhaustion, pain during or after intercourse, lower backache, painful bowel
movements, bloating, swelling, irregular or heavy cycles.
There is no cure for Endometreosis and the treatment options currently
available are very limited. Women are given injections to supress the estrogen
in their bodies, the endometreosis is excised or lazered, or they undergo
radical surgery removing all of their reproductive organs.
Interstitial cystitis (IC) is a chronic inflammatory condition of the bladder. Its cause is unknown. "Common" cystitis, also known as a urinary tract infection, is caused by bacteria and is usually successfully treated with antibiotics. Unlike common cystitis, IC is believed not to be caused by bacteria and does not respond to conventional antibiotic therapy. It is important to note that IC is not a psychosomatic disorder nor is it caused by stress.
WHO IS AFFECTED?
IC can affect people of any age, race or sex. It is, however, most commonly found in women. Recent epidemiological data suggest that there may be greater than 700,000 cases of IC in the US. I do not have the statistics for Canada.
SYMPTOMS
Some or all of these symptoms may be present:
FREQUENCY: Day and/or night frequency of urination (up to 60 times a day in severe cases). In early or very mild cases, frequency is sometimes the only symptom.
URGENCY: The sensation of having to urinate immediately, which may also be accompanied by pain, pressure or spasms.
PAIN: Can be in the lower abdominal, urethral or vaginal area. Pain is also frequently associated with sexual intercourse. Men with IC may experience testicular, scrotal and/or perineal pain, and painful ejaculation.
OTHER DISORDERS: Some patients also report muscle and joint pain, migraines, allergic reactions and gastrointestinal problems, as well as the more common symptoms of IC described above. It appears that IC has an as yet unexplained association with certain other chronic diseases and pain syndromes such as vulvar vestibulitis, fibromyalgia and irritable bowel syndrome. Many IC patients, however, have only bladder symptoms.
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My Endo and IC Story . . .
I hope you find my story beneficial and you know that you are not alone. **There are some links at the end, which may be helpful to some people** July 2000 ========= Hi, my name is Marlene and I am one of the many women who suffer from Endometreosis. Prior to my diagnosis of this condition and researching it after I was diagnosed, I had only heard of the term "Endometreosis" but I really had no idea of what it was and how vastly it affects your life. In addition, I researched and became very aware of other conditions that can develop along with Endometreosis, such as adhesions and interstitial cystitis. There are others, but after enduring a year of chronic pain suffering I was finally diagnosed with these, although my difficulties first came to light in May 1998. I am 39 and the mother of two children. Being able to have children is something I feel very blessed with, as a lot of Endo sufferers are unable to conceive, when I was diagnosed with Endo our family was complete and my children were 15 and 12. I had always experienced painful and heavy cycles, but just attributed that to something that was normal, something I had to contend with. The pain and discomfort worsened as I got older, but because it was a gradual onset, I just learned to live with it. However in May 1998, this changed. I went to my Doctor because I had an excruciating cycle, I felt like I was in labour the entire time. I barely made it through work each day. During the appointment we discussed how intense the last cycle had been and he had known that I suffered from this, as he read back on my chart, he said "this has been happening for at least six years, it's time I refer you to a Gynecologist". I saw the Gynecologist and he decided to perform a laporoscopy, which was scheduled for August. In the third week of July, while I was at work and preparing for holidays, I had a "pain attack". It was so intense, it felt like someone was stretching and pulling my insides I doubled over gripping my lower abdomen and was reduced to tears. I drove home crying and sobbing out loud. I can only compare it to the pain felt during the last stages of labour. The attack finally subsided somewhat when I got home but still I was in intense pain. The next day I went to the Doctors for pain medication, as I thought it would pass. By Saturday it hadn't and the pain medication (Tylenol 3) didn't touch it, so I went to emergency. The Doctor there really did nothing other than give me a shot of Demerol and sent me home. On Sunday, I returned once again to emergency, the same Doctor that sent me home the day before was working and I feared he was just going to medicate me and send me home again. I was relieved when the Gynecologist on call saw me. He immediately admitted me and scheduled me for an emergency laporoscopy. I waited the remainder of Sunday and Monday night until 6:00 pm before I had the procedure. I was hooked up to an IV and still very much in pain. I awoke in recovery and was told that the Gynecologist had "Drilled My Ovaries". Following this procedure the pain had improved but I still had a lot of low pressure and a stretching and pulling sensation, somehow I felt that what he had done wasn't going to rectify things. I was off work for 3 weeks recovering. I felt fairly good up until mid September. It was then my cycles continued to intensify and started coming every 2 weeks. I went back to another Gynecologist who advised me that I had Polycystic Ovarian Syndrome". The fact that my cycles were coming every 2 weeks he recommended a partial hysterectomy. Due to the vast waiting list for surgery I was scheduled for surgery in January. While I was at work near the end of November, I experienced yet another "pain attack". Again I left work in tears and drove home sobbing uncontrollably. I called the Gynecologist who prescribed me Torodol. This didn't do a thing for the pain. I was doubled over and felt like I was dying. Actually at that point I wanted to. I phoned him and advised him that the med wasn't working. He booked me for the emergency hysterectomy two days later. The surgery went well and so did the recovery. Although it was difficult recovering from an abdominal surgery, it was something I felt I never wanted to have to experience again. I returned to work in January of 1999 and felt great until March. My pain returned after 5 months. It was a relief not having painful cycles, but nonetheless I had "pain" once again. I went to emergency on three separate occasions. The first two times I received shots of Demerol and was sent home. During one of the visits the attending physician told me "Some women just have to learn to live with pelvic pain". Needless to say I felt like punching this guy out!!! I wondered if he would say the same thing to his wife, daughter or mother. I looked at him with cold eyes and the strongest voice I could muster and said "I find that hard to believe because I have always been healthy and previously had no medical problems". Finally on the third trip to emergency a different attending physician found I had a Urinary Tract Infection and prescribed me antibiotics. Not fully convinced that this was the end of my problem, I went to the Gynecologist again. He sent me for an ultrasound and found that I had a cyst on my left ovary. He began giving me Depo Provera shots. I began that treatment in May and by June felt good once again. This lasted until February 2000. My pain struck again, but I thought it was another UTI since I had two in the spring, the pain seemed similar. I went to a clinic and they confirmed that in fact I had a UTI and prescribed me antibiotics. My pain did not stop after the antibiotics and was so intense I couldn't work. The pain remained constant and occurred everyday. In March my Doctor placed me on medical leave. He also scheduled me for a barium enema test which showed nothing. My Gynecologist placed me on an "emergency" laporoscopy list. I finally had the laporoscopy in April. He came to see me in recovery and told me he found a lot of adhesions and removed as many as he could. He also advised me that he found "Dark Spots", which could be "Cancer" or "Endometreosis" and he would have the test results in a week. That was indeed a long stressful week. I was so scared thinking I had cancer and wasn't so concerned about having Endometreosis, cause surely that was treatable and I hadn't really heard too much about it so how bad could it be.... Well the pathologist report came back negative on both Cancer and Endometreosis. As much as I was relieved I didn't have either, I was beside myself....what then could be causing all this pain.... It was now the beginning of May and my pain was not improving. I was on doses of Demerol every 4 hours and many days was double dosing because the pain was so intense. I needed relief from the pain, it was so warring and I was so fatigued. I went back to the Gynecologist and it was decided we would remove my ovaries. I was scared thinking about having to recover from yet another abdominal procedure. This surgery would place me into immediate menopause, which could increase my chances of getting heart disease and osteoporosis as well as the other symptoms relating to menopause, but mainly all I could focus on was being out of pain. I had the surgery June 7, 2000. My Gynecologist came to see me after surgery and said he was surprised at how many adhesions had formed since my first surgery only 1 1/2 years prior. The post op report showed that both my ovaries had been pulled out and stretched, were totally encased with adhesions and were adhering to my abdominal wall. I also had adhesions around my appendix and colon. The pathologist report this time confirmed "Endometreosis". Why it didn't following my laporoscopy I still wonder. This really deflated my confidence in the medical treatment I had received so far.....why hadn't they detected this 2 years ago when all my problems started. After reading the report, I thought no wonder I was in so much pain and now I had a diagnosis, "Endometreosis"....But I was sure after this major surgery, this would surely fix things now.... As much as I was very sore and tender recovering from the abdominal surgery, it was a healing pain...the other pain ceased to exist...I was elated and relieved.......This however, was soon shattered.....two weeks after the surgery my pain returned. I was absolutely devastated. After all the months of experiencing pain, 2 laps and 2 major surgeries which each time were supposed to rectify the situation and it didn't. I saw my Doctor and the Gynecologist, who both told me that they felt my pain would get better with "time" and I should stay "active".....I wondered how active I could be when most days have been spent in bed enduring debilitating pain. I also wondered, how long "time" would take.... I began researching Endometreosis, since now I had a name and a reason for all the pain. I came across some very informative web sites. I also found a woman's support format at OB GYN.NET. My searching also led me to the name of a Gynecologist who is another specialist, one that deals with "Chronic Pelvic Pain" and is a member of the "International Chronic Pain Society". My Doctor gave me a referral to her and I am now awaiting an appointment, I see her this fall. I am hoping she holds the key and the answers for my continuing pain. In my research I found that approximately 25% of women continue to experience pain even after a full hysterectomy. Also, as Endometreosis is an estrogen based disease it requires estrogen to survive, however, removal of your ovaries does not constitute your body will no longer have estrogen, because endometreosis can sustain it's own estrogen therefore, it can still remain. Also there can be a possibility of an ovarian remanent if the surgeon misses removing part of the ovary. So after finding this and having a continuance of pain, I feel that they didn't remove all of the Endometreosis or I have adhesions that have formed. It turns out that I also have IC. During this whole experience, it has been frustrating to say the least to come across physicians who lack the knowledge and understanding of this disease. As well as the attitudes encountered, "you have to learn to live with it", "stay active", "you and your family may just have to accept that you will be spending days in bed". I am sorry but I can't accept being reduced to that, I won't. I want my life back!!! This condition has totally hindered my sense of freedom and career, been extremely difficult on my family, and the constant unrelenting pain is so difficult to deal with. The disease is said to be "Non Life Threatening", I wonder who came to that conclusion....it is obviously someone who hasn't experienced it or watched someone they love suffer with it. It may not physically kill you, but it can kill your spirit and sense of well being, the person you were and want to be.....if you let it. March 2001 - Update =================== I travelled out of town to see the specialist in October and it was decided she would perform Conscious Pain Mapping/Patient Assisted Laporoscopy. I finally had the surgery in February and she discovered massive amounts of dense adhesions inside of me. They had formed a thick band across my abdomen and had even formed on my stomach. I was also tested for a bladder condition that causes pelvic pain, Interstitial Cystitis. Interstitial Cystitis is an inflammation and breakdown of the mucus lining in your bladder, there is no cure but there is treatment available. It is a very painful condition to have...it is treated with medication and diet. I am so relieved and happy that something was found during this past procedure. The Doctors who I had seen locally had the attitude and treated me like the intense pain I was in was not real as nothing had been found in all the medical tests I had performed on me. I had previously asked the Doctors that I had seen if my pain could be from adhesions, but I was told that adhesions "don’t form that quickly". The research I came across indicated that they can start forming in the first few days after surgery. Note that adhesions can only be detected through a laporoscopy and IC can only be found when a cystoscopy is done (a scope is inserted up into your bladder to view the interior walls), at this time there are no other diagnostic tests available to test for either of these conditions. I am now cautiously optimistic in my quest to be pain free. As I now have documented proof how quickly I form adhesions, and I will have to learn how to manage IC. I can only hope that this last procedure is a success for me, if it isn't it means more invasive surgery. The surgeon used Interceed Gel which helps with the formation of adhesions, perhaps I will respond well to it. The unfortunate part is adhesions form from having surgery and it is a vicious cycle the more surgery you have the more adhesions form. Adhesions cause pain and can also embody themselves around vital organs, so removal of them is necessary. Also interstitial cystitis (IC) is a very painful condition, depending on the severity of IC, the pain felt has been compared to some forms of cancer. As I have had a combination of endo, dense adhesions and IC at the same time, the pain I experienced was very warranted. November 2001 ============= In August I required another surgery. I travelled once again to Vancouver and had another laporoscopy. There was some tissue that the surgeon had seen in February that she wasn't able to reach and at that time she didn't know if it was causing me pain or not. I was still experiencing daily pain from it. I was so relieved and happy that she was able to do the surgery via laporoscope and not a laporotomy (full cut incision)....2 in 2 1/2 years had been enough for me. I had a stent placed in my urter so she could go deeper than the previous laporoscopy. She removed the tissue and also more adhesions that she hadn't been able to reach in the surgery in February. These had surrounded my colon. Immediately following this surgery I felt absolutely wonderful. I had "no pain". It was the first time in 18 months that I felt like myself again. I truely was doing the dance of Joy!!! I no longer needed pain killers to get through the day. I have just returned to work on a part time basis and am so elated that I am getting my life back. I still do experience pain on some days as I will always have IC and if I over do anything too physical my body lets me know it but I am living a life without "daily" debilitating pain.....this I believed would never happen. As much as I continue to have limitations healthwise I can live with them....and when I do experience pain...I rest and take pain killers only if needed.....I just feel so thankful to have been able to come this far from where I was. So I treasure the good days and rest on any bad days I have. This has been a life altering experience for me. All my life I have never been sick, other than the common cold, or limited physically so to develop and endure a chronic pain condition this past 19 months has really changed me. I urge anyone who is experiencing pain to research as much as you can to gain an understanding of what is happening to you. Also, even though you may not have the “exact” symptoms of a particular condition but you are experiencing pain which is undiagnosed, ask to be tested so that you can get a diagnosis or the condition can be ruled out. There are many things that can cause abdominal pain in women and there can be "multiple conditions" that cause pain. I underwent 4 laporoscopies, 2 laporotomies (full incision cut), an upper GI test, barium enema, IVP test, cystoscopy, before my pain was pinpointed. My pain consisted of a combination of conditions, polycystic ovarian syndrome, endo, adhesions, IC (interstitial cystitis). Your body emits pain messages when something is wrong...if you are experiencing pain.....keep searching until you know what is causing it....it may take awhile and you may need more than one opinion, but be strong in your conviction and don't give up until you receive the answers your are searching for. |
by me which helped me to express some of the
emotions, thoughts and feelings, that I had
experienced during the really difficult times
in my health struggle. You may find you have
experienced similar emotions.........know
that you are not alone...
click on each of the icons to go directly to that page.
was feeling but it was helpful to share with friends and
family for them to obtain a broader understanding of endo.
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