Updated: Oct 26, 2020
This is my story dealing with Endometriosis
At the age of 26 was when I was diagnosed with severe endometriosis which would be stage IV. I now believe I developed it with my first menstrual cycle, because the pain was bad with my first period. I always had severe cramps and back pain with each period, so I thought that was normal. I had so many problems in my teen years with pain and ovarian cysts. I had many ultrasounds done by the time I reached 21 because of all the problems I was having. It was just incredible and I was popping motrin 800 mg like it were candy for the pain. In fact I think the motrin is what caused me to develop an ulcer at the age of 16, which lasted until about the age 24. My teen years were horrible with constant pain and always going to the doctor and they didn't know what was wrong with me.
The day I was diagnosed with severe endometriosis and was told I needed to have surgery, was a day I will never forget. I have never heard of endometriosis before, this was a first for me, and not knowing what it was scared the hell out of me. I left the doctors office crying, I was so scared. This was something that could not be avoided, since I was in so much pain, I could barely walk or sit in my car. I felt like a huge tennis ball on my left side, like a hernia or something. It seems I developed one of two huge cysts.
I was scheduled to have a laparoscopy which is a small incision in the belly button. I was told before hand I may loose my left ovary and tube. Well as I went in to have the laparoscopy done, it ended up turning into a major surgery and I had laparotomy, which is where a large incision is done from left to right in the bikini area. It was a long and tedious surgery for the two surgeons who worked on me, because I was a bad mess. They had to free my ovaries and organs because they were not mobile, they were adhered to other things from the adhesion's. I had what is called a chocolate cyst on my left ovary and one in the cul-de-sac somewhere. I was very fortunate, the doctors were able to free my ovaries and they closed me back up with all my parts still intact.
My recovery from surgery
I tell you if they have you hooked up to a morphine machine they should at least let you know. The nurse gave me something with a button on it and told me to press the button when I feel pain. I had some big medal box next to my bed that the button was connected to.. I had a lot of pain, so pressed the button, thinking I would feel something and pressed it again and nothing happened.. I pressed it so many times the next thing I know, I feel nauseous.. I think I was od-ing from the morphine. LOL
It took me over a year to recover from this surgery. My abdomen was swollen for over a year. I still had pain from the surgery going on for at least a year. My weight went up from 115 to 140 after my surgery. I also had complications due to surgery that lasted years. I had to see the doctor once a month for a year and the first 6 months they had me on Lupron which puts you in pre-menopause. The shot hurt like hell but I loved it. It had me in a good mood 24/7, it was like a happy drug for me. I did experience some mild menopausal symptoms, which wasn't bad. After the six months were over they now put me on birth control to stop my periods and this lasted for a few years. It was also to help shrink any endo that they may have missed in surgery. Then after that I spent the next year going to the OB GYN every two months to get checked.
This was a long ordeal after surgery it just seemed never ending. After years of getting poked and prodded I just couldn't take it anymore. My endo was under control now where I no longer had any pain. I decided this is enough already and stopped the hormonal treatment and stopped going to the doctors all together. I needed a break already..
Educating myself on this disease called Endometriosis
I decided I need to know what it is that I am dealing with. I now know this is a disease and one that I will have to live with for the rest of my life. There is no cure, only management when it comes to Endometriosis. I started buying every book I could find on Endo and read them all. I am now educated about this disease and prepared in case I have to go thru this battle again. As they say knowledge is power and it prepared me for my continued battle with Endometriosis. Mind you every woman is different when it comes to the pain. The pain can be debilitating, that I know for a fact since I had my days where I was bed ridden from excruciating pain.
Books on Endometriosis
My second bout with Endometriosis
I think I was about 35 at this time, when I went thru my second bout with endo. I was always in a lot of pain and I just knew I might end up in the hospital again with a second major surgery on my belt. I went to see my doctor and he referred me to this gynecologist who was an older man. I went to see him to talk about treatment. I was trying to find out what my options were, but the doctor just kept ignoring me and told me I need surgery. I told him I would like to go on hormonal treatment and he just refused to listen to me. I just got so upset and left because all he wanted to do was cut me open. I refuse to accept anything he told me, because I have the knowledge now and I know what I am dealing with and I know what treatments that are available.
The first one traumatized me so much that I will do everything in my power to prevent a second one.
I said to myself I am not going to take this.. I need a doctor who is going to listen to me and discuss different methods of treatment. I do not need a butcher that just wants to cut me open again. So I went out looking and I found another gynecologist. Boy did I find gold! I made my appointment and I discussed my situation with the doctor. I was so pleasantly pleased when he sat down and listened to me and then he discussed all the hormonal treatments and their side effects. I was so happy to finally find a doctor who was caring and one who listened to me. This doctor was younger and seemed up to speed with what was going on with endo, where I think the older doctors are not updated or they just don't care.
At this point I now have stage 4 extensive endometriosis, so now I am desperate to try and fight this. This bout with endo has caused me problems with my bladder. It seems I have implants on my bladder and it was aggravating my bladder, causing me to have to pee a lot as tho I had a bladder infection. It was really annoying and frustrating. I know of all the hormonal treatments and the side effects for each of them. I am forced to hit this hard and start with the drug Danazol, which is a male type hormone, which induces pseudo-menopause. This is one drug that has some serious side effects. I was always scared of this drug, but now I am forced to have to use it. I was on it for 4 months and the side effects were horrible, but it did what it needed to do and it helped with the pain. It took a few months for the side effects to go away after I stopped taking it. It was a horrible experience to say the least. Once I stopped taking Danazol I went straight on Norethindrone which is is a form of progesterone, a female hormone. Norethindrone prevents ovulation. I stayed on this for the next few years until the pain was gone.
I am now age 44 and dealing with my 3rd bout with endo and on we go again..
My continued life long battle with Endometriosis
Living with this disease has made me more intuitive with my body. This will be an on going battle, but I have been able to manage my pain by mentally blocking most of it. I somehow developed this method over the years after going through so much pain. I do not like taking medicine or pain relievers unless I really have to. Now I will continue to fight until menopause sends me a happy note.. Mother nature has come to take her wonderful gift away.. One day I will be free at last from this disease!
What is Endometriosis?
Endometriosis is the abnormal growth of cells (endometrial cells) similar to those that form the inside of the uterus, but in a location outside of the uterus. Endometrial cells are cells that are shed each month during menstruation. The cells of endometriosis attach themselves to tissue outside the uterus and are called endometriosis implants. These implants are most commonly found on the ovaries, the Fallopian tubes, outer surfaces of the uterus or intestines, and on the surface lining of the pelvic cavity. They can also be found in the vagina, cervix, and bladder, although less commonly than other locations in the pelvis. Rarely, endometriosis implants can occur outside the pelvis, on the liver, in old surgery scars, and even in or around the lung or brain. Endometrial implants, while they can cause problems, are benign (not cancerous).
What are Endometrial Symptoms?
Pelvic pain: A major symptom of endometriosis is recurring pelvic pain. The pain can be mild to severe cramping that occurs on both sides of the pelvis, in the lower back and rectal area, and even down the legs. The amount of pain a woman feels correlates poorly with the extent or stage (1 through 4) of endometriosis, with some women having little or no pain despite having extensive endometriosis or endometriosis with scarring, while other women may have severe pain even though they have only a few small areas of endometriosis. Symptoms of endometriosis-related pain may include:
Dysmenorrhea – painful, sometimes disabling cramps during menses; pain may get worse over time (progressive pain), also lower back pains linked to the pelvis
chronic pelvic pain – typically accompanied by lower back pain or abdominal pain
Dyspareunia – painful sex
Dysuria – urinary urgency, frequency, and sometimes painful voiding
Throbbing, gnawing, and dragging pain to the legs are reported more commonly by women with endometriosis. Compared with women with superficial endometriosis, those with deep disease appear to be more likely to report shooting rectal pain and a sense of their insides being pulled down. Individual pain areas and pain intensity appears to be unrelated to the surgical diagnosis, and the area of pain unrelated to area of endometriosis.
Endometriosis lesions react to hormonal stimulation and may "bleed" at the time of menstruation. The blood accumulates locally, causes swelling, and triggers inflammatory responses with the activation of cytokines. This process may cause pain. Pain can also occur from adhesions (internal scar tissue) binding internal organs to each other, causing organ dislocation. Fallopian tubes, ovaries, the uterus, the bowels, and the bladder can be bound together in ways that are painful on a daily basis, not just during menstrual periods.
Also, endometriotic lesions can develop their own nerve supply, thereby creating a direct and two-way interaction between lesions and the central nervous system, potentially producing a variety of individual differences in pain that can, in some women, become independent of the disease itself.
The Stages of Endometriosis
Surgically, endometriosis can be staged I-IV (Revised Classification of the American Society of Reproductive Medicine). The process is a complex point system that assesses lesions and adhesions in the pelvic organs, but it is important to note staging assesses physical disease only, not the level of pain or infertility. A patient with Stage I endometriosis may have little disease and severe pain, while a patient with Stage IV endometriosis may have severe disease and no pain or vice versa. In principle the various stages show these findings:
Stage I (Minimal) Findings restricted to only superficial lesions and possibly a few filmy adhesions
Stage II (Mild) In addition, some deep lesions are present in the cul-de-sac
Stage III (Moderate) As above, plus presence of endometriomas on the ovary and more adhesions.
Stage IV (Severe) As above, plus large endometriomas, extensive adhesions.
Endometrioma on the ovary of any significant size (Approx. 2 cm +) must be removed surgically because hormonal treatment alone will not remove the full endometrioma cyst, which can progress to acute pain from the rupturing of the cyst and internal bleeding. Endometrioma is sometimes misdiagnosed as ovarian cysts.