My 20-year Relationship with Endometriosis

This is a guest blog post by Janet Kimmel, personal trainer, and founder of  Hypopressives Vancouver.

It was in my early twenties during my final year of university that I started having heavier than usual menstrual cramps and bleeding.

My periods had always been bad, but this time it was unbearable. I also broke out in hives all over my face, and my abdomen swelled and ached to the point where I would double over, feel dizzy and struggle to breathe from the pain. The kind of pain where you really just want to pull the covers over your head and beg to fall asleep in the hope of some escape from the blood clots, the cramps and the nightmarishly nauseating pain.

I went from one doctor to the next and no one could figure out why this was happening until finally I found a gynecologist who felt sure I had what he described as 'chocolate cysts', medically known as a complication of endometriosis. I had my first surgery shortly after that, at the age of 23.

For those of you mercifully unaware of what endometriosis is, it's an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis.

In endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal tissue that binds organs together.

Following my surgery, I woke up to find my gynecologist stooped over me, saying “I saved your ovaries, you have a chance to have babies one day”. Endo caused my ovaries to become glued down; the second gynecologist who was the operative assistant felt it would be easier to remove them. Thankfully, my gynecologist chose to take the time to carefully unglue as best he could, and to clean as much of the endo off them as possible.

In that moment I almost lost the choice or even ability to ever have children. I have come across women since then that did lose their ovaries. I know that sometimes there may be no way to save ovaries from endometriosis, and I feel lucky and grateful that mine got saved. I did however lose my appendix, which was covered in endometriosis and my uterus had some significant endo too, which they did their best to carefully remove.

Soon after that first surgery I realized that this was not over. I would have this condition - one way or another – until menopause. After the operation, when weird pains returned, I was informed about scar tissue and how scar tissue can lead to pain as well. The endo itself slowly worked its way back with every monthly cycle until I had my second, third and then fourth surgery.

Then there were the drugs. Straight after my first surgery we tried Lupron to which I had a severe reaction. We then tried different combinations of progesterone-dominant contraception pills. I would bleed through them all, end up in hives, severely moody with intense joint and body aches. Eventually we also came to the conclusion that this treatment was probably not working either because I had surgery 2, 3 and 4 while trying all of these pills. The pain did not budge, the blood clots were there every month and the physical and psychological exhaustion of keeping up with life when all you want to do is curl up in a fetal position until the pain and blood clots leave you, really plays havoc with your mood and quality of life in every way possible.

I never thought of this as something I was fighting or suffering from. I would say that in my 20’s I was in denial and in my early 30’s when we wanted to have babies, I just felt very scared and worried. Everyone else was having two babies during this time and I was still trying - with no luck - for my first. Nothing but blood clots and cramps greeted me every month. It was upsetting and maddening and totally out of my control.

In the end however, I did manage to get pregnant. It was really hard work - how do you stay calm to create the “right environment” while everything inside you is screaming "get this horrible endo out of me so I can have babies and a life!” But in the end my son was born and after a 4-year gap we also had a second baby - we needed a little more help then. By that stage my endo was worse and I was over the 35 year mark and due to all my previous laparoscopies, my ovaries had issues and I was low on some hormones. Our kids are my two miracles. They are strong willed beyond belief and I joke that only strong-willed eggs and sperm could have survived inside my body so it makes perfect sense that they are super lively.

My relationship with endometriosis continues. I’ve had some scar tissue removed, which helped, but the endo is back. I now also have the added condition of Adenomyosis, which is nasty and really not fun and probably a complication of endometriosis and /or previous surgeries. It takes a lot of energy just to be OK.

OK with a swollen abdomen, OK with low energy, OK with pain starting 5-7 days after my period ends and progressively getting worse until the blood clots, cramps and dullness hits me again. OK with being out of my mind moody and just wanting to snap people’s heads off or sob in the hope that it will all go away. OK with a fuzzy brain because you have to focus so hard on just rising above the pain and discomfort.

So what do I do about all of this? I ride the blood clot wave every month, breathe a sigh of relief, sometimes even thinking – “Hey, I am just being a wimp, I should try harder”…until it all comes back again and I think – this is hopeless. It is what it is, do the best you can, carry on.

The truth is I spend more than 3 weeks of a month in some degree of pain and discomfort. Endo affects my digestion, my mental state and even my desire to be social - there is nothing sexy about a bloated belly, gas, pain and blood clots plus hives and a pain-ridden angry face. It is sweatpants and cozy blanket time. I often find myself at work when all of a sudden a bolt of pain hits me and sends out dizzy stars to dance in front of me. I pause, take a breath- a big one - and carry on.

And what advice can I give you? The answer is - sometimes you manage and sometimes you just can’t. But here’s what I have found to help me through.

In the last 10 years I’ve worked hard to embrace endometriosis. How have I done this? By being realistic. Resting when I can (which is not often, but I try - it makes a difference). Eating as healthily as I can (I am human and don’t always succeed and often that glass of red wine looks just too good to pass up). I try and handle stress by being mindful but you know this is a stressful disease, it leads to anxiety, and dark places way to often. I do loads of exercise, get fresh air and stay hydrated. I try to avoid sugar, alcohol, refined carbs and processed foods. I do this not because I feel this will get rid of endometriosis. I do it because I have physically felt that it gives me just that much more energy and stability to help outweigh the symptoms of endometriosis and gives me some strength and some balance.

Endo is known to make you moody and cause weight gain. I don’t like that. Especially after all my efforts, so at times I am just discouraged and frustrated. Endo is lonely. I can’t expect my husband or friends or family (except my mom) to even remotely understand what this is about. It is dark and scary in there and it has been for over 22 years. I know this disease. Each time I hear of someone with it I know what they feel. What they live. And my heart goes out to them.

Maybe, not too far from now a cure will be available. My mom had endometriosis and a hysterectomy at 40. I am worried my little one will have endometriosis and I don’t wish this on anyone, let alone my little girl. I am now facing the choice of a hysterectomy this summer. Do I say thanks to my uterus for keeping my babies safe until it was time for them to be born, but it is time we part ways, or do I say "better the devil you know" and stay in this relationship with endometriosis for another 10 years or so until menopause? It is a choice that I have to make sometime soon. It is not an easy one, but it is finally something within my control that could have a real positive outcome for me.

I hope that with the attention endometriosis is getting (including from celebrities) and the research the medical field is finally undertaking, that not long from now no sufferer will have to make this decision because of endometriosis.

Janet on switching to Lunapads Performa Pads:

"Using soft, black cloth pads makes endometriosis less dramatic. I'm a very visual person, so blood stains and clots on a black surface is less dramatic. You can’t really see it that much. Having something less irritating (goodbye disposable pad rashes!) comfy and soft close to my body is much more comforting when I am already in pain and discomfort. It's nice to have products that calms the drama rather than adds to the already intense uncomfortable time I have with endo. I was worried that I would bleed through it all but I don’t. It works perfectly. I changed pads as often as I would with regular pads."