Endometriosis: What Is It and How Can It Affect You?
What is Endometrosis?
Endometriosis is a disease affecting women that causes the uterine lining (endometrium) to grow outside the uterus and in different places in the body. It is most often found on the ovaries, fallopian tubes, bowels and bladder. Unfortunately there is no cure and very little treatment. There are four stages of endometriosis:
- Stage One: Minimal
- Stage Two: Mild
- Stage Three: Moderate
- Stage Four: Severe
In September, 2014 I was diagnosed with stage 2-3 endometriosis. I felt a whole range of emotions from relief for finally knowing what was wrong with me to sadness at having something that has no cure. I quickly realized that there isn't a whole lot of information out there about endometriosis and the stuff that is out there is very clinical. I didn't just want to read about symptoms and treatments, I wanted to hear from women that had it and how they coped. So here is an article that isn't just about the clinical aspect but about how I personally deal with it.
The symptoms of endometriosis can vary greatly from woman to woman so it is important to remember that what you experience could be completely different from what another woman feels. There is however, some symptoms that most sufferers have with varying degrees of severity.
- Painful periods: Although it is obviously normal to experience pain and discomfort during your period, if the pain is severe or stops you doing your normal activities then that is not normal.
- Heavy bleeding: It can be hard to tell sometimes what is normal when it comes to how much you bleed. If you find that you change your pad/tampon/cup often then you may be bleeding more than what is healthy. Another way to tell is by blood clots (I know it's gross but it's an effective way to tell), if your blood clots are bigger than a U.S quarter cents piece then that is an indication that you are bleeding too much.
- Pelvic pain: This again is somewhat of a broad symptom. The type and severity of pain you can feel can vary tremendously from person to person. Most women tend to feel it in their lower abdomen and the pain is worse the closer they get to their period.
- Infertility: This is perhaps the most common and most distressing symptom of endometriosis. Women with this disease often have a very hard time getting pregnant or carrying a pregnancy to term.
You can read about these and other symptoms in more detail at https://www.endometriosis-uk.org/endometriosis-symptoms
A uterus affected by endometriosis
Diagnosis and Treatment
Endometriosis is a very common disease, with as many as 10% of women suffering from it; despite this many women go undiagnosed. The only way to tell for sure if you have it is to have a laparoscopy, because of this many doctors are hesitant to give a diagnosis. Obviously doctors don't want to run the risks of surgery unless they absolutely have to so they look for other causes first. This can lead to women having to wait quite a long time before they can get a firm diagnosis, the average is 7.5 years.
Often doctors start treatment before they have a diagnosis. There are a couple of things that doctors will try first:
- A hormonal contraceptive like the pill
- The Depo-Provera shot
Both of these treatments can help regulate your menstrual cycle and hormones. Since the endometriosis grows in the same way as regular endometrium, controlling your hormones can help reduce the amount of endometriosis and can even get rid of it completely. Using these treatments may not completely get rid of your symptoms it can reduce them while other causes are being ruled out.
Once all other causes have been ruled out and you've got a firm diagnosis then doctors are more willing to take a more aggressive approach to treatment. One of the most common treatments now is a Gonadotrophin-releasing hormone (Gn-RH) such as Zoladex or Lupron. These drugs work by reducing the production of estrogen and bringing on an artificial menopause. Estrogen is the hormone responsible for producing endometrium, if you reduce the amount of estrogen in the body then the amount of endometriosis should be greatly reduced if not completely eradicated. Another treatment is a drug called Danazol, an antiprogestogen, which is a male hormone. It also works by reducing the amount of estrogen by adding male hormones to the body. It was very popular years ago but it is rarely used now as it can have some pretty nasty side effects.
Some women also choose to go the surgical route, although many doctors are hesitant to do this. Most surgeries for endometriosis are done through laparoscopy and involve burning away any visible endometriosis along with trying to prevent any lesions. In the case of severe endometriosis a radical or complete hysterectomy, where all the reproductive organs are removed, is sometimes the best option. Removing the ovaries, fallopian tubes, uterus, and cervix stops the production of estrogen and removes much of the endometriosis that is already there. Some women decide to have a hysterectomy when they are done having children.
What Do Women Use For Treatment?
What has been an effective treatment for you?
Me right before my surgery
Living With Endometriosis-My Story
Although endometriosis is a horrible disease it is very important to remember that it can be managed and you can live with it. To say that it won't negatively affect you would be a lie but it won't take over your life, unless you let it.
When I was 11 I got my first period. Right from the get-go I had heavy bleeding and pain. Since I was fairly young I was the first of all my friends to get their period, because of this I had no one to compare it to; I thought that what I was experiencing was normal. It wasn't until one night when I was 13 and I woke up to find my sheets soaked in blood that my mother began to suspect something wasn't quite right. A few months later I had my first ovarian cyst and ended up in the hospital. From there it was an uphill battle of trying to get answers. It seemed that everywhere we went we were met by people who didn't believe or take me seriously. I was told by doctors that what I was experiencing was just a normal part of growing up. I was told by friends and even teachers to stop complaining about it. It was probably the most frustrating few years of my life. I felt like I was up against a wall of disbelief with no one to turn to. I knew in my heart that something wasn't right but there were times that I thought maybe it was all in my head. Eventually when I was 18 I met a very understanding gynaecologist who did my laparoscopy and diagnosed me.
Since then I have been on a roller-coaster of emotions. I have felt fear for what this disease will do to me, anger at why this had to happen to me, and even relief that I now have an answer to what is wrong with me. Even though it has been over a year since I've been diagnosed I am still coming to terms with it. I don't know what the future will bring, whether my pain will get worse or whether I'll be able to have children. I think that's what scares me the most; fear of the unknown. But there is one thing that I know for sure, that I will not let this disease win.
Sometimes I feel as though as soon as I've got my strength back some symptom comes along to knock me back off my feet. There are times when the pain is so bad that I wish someone would put me out of my misery. Being in pain so much has given me a high pain tolerance but I can only take so much. It is the proverbial straw that broke the camel's back. After a bout of pain like that it takes me days to recover. It's not just the pain either, where I have endometriosis on my bowels I get horribly constipated, often I go more than a week without going to the bathroom and when I do go it is agony. Of course I have good days and bad days and I try not to let the good days be ruined by the bad ones.
What Has Helped Me?
I have tried several different treatments for my endometriosis. After I had my first cyst I was put on a low dose of the pill by my GP. At the time I was only 13 so my doctor didn't even think of the possibility of me having endometriosis. It was hoped that I would be on the pill for a short time until my cycle had been regulated. It did give me some regularity to my menstrual cycle and lessened my bleeding. Unfortunately it didn't do much for my pain. I was put on a higher dose by a gynecologist but the side effects where too much for me so I was pulled off that and put on the Depo-Provera shot. I had that every 3 months for 4 year but it didn't really do much. It wasn't until after I was diagnosed that I was given the Gn-RH Zoladex. I have been on that for almost a year and have just recently finished taking it. I didn't find the side effects too bad although I did experience some hot flashes and mood swings. It has helped a lot with my pain and some of the other symptoms I get. Unfortunately, as with all Gn-RH drugs, I can't be on it long term. I don't know whether my symptoms will come back or whether they will be gone for good, but I am happy that I got a year of feeling better.
When it comes to controlling my symptoms I have a few different methods. My main symptom is pain, I get a lot of pain on my lower left side which can be hard to control. I take a few different pain medicines depending on the severity. If my pain isn't that bad then I'll take over-the-counter medicine like paracetamol (Tylenol). If my pain is in the middle-not too bad but bad enough-then I'll take paracetamol with codeine. If that doesn't cut it then I take 50-100mg of Tramadol. Obviously I try not to take it that often since I don't want to develop a tolerance or dependency to it. I also take a stool softener daily to try and prevent constipation. It's taken me a while to figure out what's what with my body but now I tell when I'm going to have a flare up a day or so before it happens.
I also find it important to have a good support system. There are times when all I need is to cry on someone's shoulder and feel sorry for myself. Having people around me that let me do that keeps me grounded. Everyone knows that you can't keep your feelings bottled up so having people to confide in is very important to maintaining your sanity.
Again you have to remember that what helps me might not help you. It is good to try several different things until you find something that works for you. Talk to your doctors and other women who have endometriosis to get some tips on what can help you.
A Short Video Explaining Endometriosis
- You are more likely to have endometriosis if your mother/sister/daughter has been diagnosed.
- There is no known cause of endometriosis.
- There have been rare cases of endometriosis being found on the lungs
- There are approximately 176 million woman worldwide who have endometriosis.
Pros and Cons of Various Treatments
Type of Treatment
Works relativity quickly, is very good at regulating your cycle
Has to be taken at exactly the same time every day, symptoms can return very quickly if the meds are stopped
Don't have to remember to take it everyday, doesn't have some of the side effects related to the pill
Takes a bit longer to work, often causes weight gain
The most aggressive drug available for endometriosis
Can't be taken for a long period of time, has some rather brutal side effects
Can give long periods of relief from symptoms
Can cause more scar tissue, there are risks involved with each surgery
Often gives women a "cure"
Means you can no longer have children, can causes the menopause
I hope that this hub has given you some much needed information about endometriosis. When you've been diagnosed it can feel like you have no where to turn. Whether you are a sufferer or a supporter, I'm hoping that I've given you a stepping stone to learning how to deal with the diagnosis. There are a couple of websites that I think offer good, sound information on endometriosis:
- https://www.endometriosis-uk.org/ (This is a charity that can also provide to help and support to women who live in the UK)
This is the first article that I've written on endometriosis but I plan to write more. Ever since my diagnosis I've wanted to help other women, I feel as though this is a good way to do that. If you have any questions or suggestions for what I can do in the future I would welcome them. Thank you very much for reading!