Let’s talk about Endometriosis.

If you have pelvic and or abdominal pain that is getting worse with each period and showing up between periods, have increasing fatigue, finding it painful to have sex, even scared that you might be sore the day after having sex, are finding sometimes that it hurts to sit down, noticing different kinds of pain, having difficulties with other digestive organs, especially during your period or during ovulation, and are curious about the potential of having endometriosis but are embarrassed or confused or scared, talk to your doctor. If you don’t have a physician, go to a walk-in clinic and talk to the doctor there. We can also help each other with encouragement and support… sympathy, empathy, ideas to try that might help. None of us is alone. Unfortunately many women suffer with this affliction. It’s much worse suffering alone and in silence. Let’s share…

Chapter 1: What is it?

The lining of the uterus (womb) thickens to prepare it for caring for a baby in-utero. A couple of weeks pass, the lining sheds if there is no fertilized egg… and we have a period. A couple of weeks later, hormones go into prep mode again and start increasing lining again… and around we go.

For some unknown reason, sometimes for some women, something goes awry. The lining tissue ends up in the abdomen, resting on or attached to the outside of another organ, or two. When hormones signal the shedding of lining, it takes place in the uterus and anywhere else that this tissue happens to be. The lining inside the uterus sheds out through the vagina. If it’s outside the uterus, there is no pathway out of the body. It’s stuck. It creates scar-like tissue wherever it resides and can over time create quite a mess and along the way, even early on, put pressure on nerves, creating pain.

Left alone, it can grow into quite a problem, in some cases, even fuse organs together.

If caught, it can be quite easy to remove. A simple day surgery can clean it up and send you back to work and your other beloved activities in less than a week.

Chapter 2: What happens when you have it?

Pain. Usually. For some women, symptoms are less painful and they manage to live their lives rather unscathed. It depends on the person and where the tissue is located. A friend and co-worker of mine has stage 4 – really bad – and has organs fused together, and has been told that to remove it surgically at this stage for her would be dangerous to a couple of her organs so no surgery for her. She has pain and worse and better days but her pain isn’t usually severe. She is managing with help from specialized gynecological physiotherapy.

My experience with it involved 3 types of pain. The first was located at about my left ovary. It was frequent, sharp, stabbing-like and if I pressed hard on the area with my fingertips, it relieved a little. It would last sometimes for a minute, sometimes for hours, off and on, but I could keep working. It increased in severity and frequency over time.

The second was very strange and difficult to describe. It was more rare, thankfully, but intense. I would feel a wave of seizing-like ache pain start at my pelvic floor, and wash over through my pelvis and abdomen ‘amping up’ like it had a volume dial. I would have about 30 – 60 seconds to get myself somewhere to lie down before it became unbearable and would overwhelm me to the floor and render me incapable of focusing, listening or talking. It felt like an alien had accessed and attacked my autonomic and nervous systems. At its peak it also felt like I had sat on a long, thick wooden stick… sorry to be so graphic. It would last from 5 to 20 minutes. After it subsided, I was weak and exhausted for the rest of the day. Although it was rare, this pain also increased in frequency and severity over time.

The third pain was a general abdominal throbbing pain. This was more comparable to ‘regular’ menstrual cramping. This one pressed on nerves that radiated around to my lower back and gave me sciatic issues down my legs. I was able to work through this one, but I found it also quite tiring and over time created issues with my back and legs that required physiotherapy and massage therapy to work through.

All 3 of these forms of pain were increased over time, and with each period cycle. Each period would become more severe as well with increased bleeding and cramping and began to last longer as well. All of my previous period symptoms I had like cramping, low back pain, bloating, fatigue, fogginess, weepiness, breast tenderness, extra hunger and lack of hunger seemed affected by this problem and continued with each month’s cycle to get worse. I felt stuck in a painful snowball rolling down a hill, collecting more pain continuously.

Addressing the elephant in the room now – this also made my sex life more and more difficult and I began finding it increasingly difficult to be actively and mindfully present in the lives of my children and husband and other loved ones. I would ask questions about their days and not be able to focus and register what they were saying. I still cared deeply about everyone in my life but I felt like there was a fog-bubble around me when it was bad.

Chapter 3: What can we do?

The first thing to do is to pay attention to yourself. Listen. Notice when you are in pain or discomfort and analyze it. If you notice a pattern, like ‘I seem to notice more pain during my period’ or ‘I seem to notice it hurts to have sex about 2 weeks before I get my period’, or ‘it’s hurting to sit down on a chair’, right it down with the date in a journal or in your day-planner. DO NOT be afraid to ‘cause’ something bad by writing it down. If it’s a strained muscle or dietary imbalance or basic gas, it’ll become evident. If things continue over a few months to get worse and you end up discussing it with your doctor and/or are referred to discuss with a gynecologist, you’ll have more information to present.

Second, I think it’s ok to do a little research but be careful not to ‘go down the rabbit-hole’ of information; this can easily create an atmosphere of doom and gloom and extra stress, worry and panic. Read a little, talk with a friend or a colleague, and after watching and noting a little, don’t be afraid to make an appointment to discuss your concerns with your doctor. When I say ‘discuss’ I mean talk as thoroughly as you need to. Ask questions, take notes and ask more questions if you feel unsure about your understanding about anything along the way.

Each of us is unique and when something goes ‘wrong’ in our bodies, it presents in a unique fashion. We know our own bodies better than anyone else, but self-diagnosing can be dangerous.

Also know that because this particular disease requires a specialist to diagnose and treat, it’s a good idea to start paying attention, noting and discussing with a doctor as early as possible. Waiting is usually involved with getting to the bottom of health issues. I was hesitant to go too early in case it wasn’t something serious and cleared itself up with a change in exercise or with massage therapy. However, waiting until I was in agony was self-defeating because things continued to progress during the time I waited to see my doctor, get the necessary tests done, wait for the gynecologist appointment and then for the surgery date. If you’re in a situation of unexplained pain, don’t put it off; call the doctor. It’s ok to not have notes.

Chapter 4: My experience

Endometriosis has been a part of most of my adult life. I’m 52 and I’ve been diagnosed with it 4 times, the first time at age 23. At the time, it was explained to me that depending on personal cases, it has the potential of making it hard to have children. If not, having children has the bonus of helping prevent the onset of endometriosis. I had 3 children in my late 20s.

At age 44, I began noticing familiar pains that eventually led me to my doctor referring me again to a gynecologist. Endometriosis was the suspected culprit. There is currently no test or exam or scan that can diagnose endometriosis. A physical and an ultrasound are done first to rule out potential difficult cysts and fibroids which can be but aren’t necessarily troublesome. A laparoscopy (non-invasive day surgery with a small incision and a scope camera) confirmed and provided the opportunity to ‘clean house’ again. I was told that the chances of going into menopause which would negate re-occurring issues was greater than going through this again. This comforted me and I was back to regular activities quickly.

At 47 I started to wonder if I was imagining things or if those very specific pains were back again. I put it off and hoped it would go away. (side note – I’m very stubborn, especially when I’m upset) My husband got me on the phone and I was back on the trouble-shooting train of doctor appointments, physical and ultrasound exams and gynecologist referral and consult. I was told that since I wasn’t having more children I had a variety of options like hormonal treatment to speed me into menopause, partial or full hysterectomy, etc. I carefully considered, asked around, researched all potential options. Since all my organs were apparently fine, I decided to go with the removal of the fallopian tubes along with the removal of endometrial tissue. This was to ensure that endometriosis could not recur. (It was all performed in the laparoscopy procedure. My gynecologist was a very skilled surgeon who chose the least invasive methods. I was never ‘opened up’ abdominally.)

It was suspected that endometriosis occurs when during the menstrual cycle of shedding uterine lining that was built up to prepare for carrying a baby, some of that lining somehow ends up on a reverse course and travels backward, out into the abdomen through the fallopian tubes. So with that portal closed, so was the potential of more of this nightmare. This time, I had gone off work because of the pain and debilitating spells. I missed 4 months while I waited for the surgery.

After recovery, I felt fantastic, freed of pain and continued on with my life. I brought a basket of fruit and chocolate to my gynecologist to thank her. Another thing I was able to do was to try a progesterone-based iud. I had it inserted at the time of the surgery. The goal for the iud was to hopefully regulate my periods, slow the buildup of uterine lining and therefore the heavy flow during my period. It worked like a charm for a friend of mine. It sort of worked for me. For some reason, it seemed to spread it out over 2 – 3 weeks instead of 5 – 7 days. At one point I was having 4 or 5 days “off” between periods. I also was incapable of becoming accustomed to the change in hormones. Even though after surgery the pain of endometriosis was gone and I was excited to be free from all of that, I found myself feeling impatient and easily irritated and frustrated. I watched it for a couple of months, wondering if I was going through some new issues. When I began to suspect the change of hormones, I realized I needed to allow myself time to adjust to the iud. I decided on a year. No problem. I’m very patient and if I know what’s going on, I feel empowered so it’s even easier. After 9 months, I came to the decision that the changes in my periods were not positive enough to warrant putting up with the underlying ‘impatience’ and ‘frustration’ that I was feeling constantly. It wasn’t me. So I saw my physician and had it removed. I felt like the sun came out after 9 months of rain. Amazing.

2 years later, those pains returned. Back on the train I got and this time being peri-menopausal I chose a different treatment plan.

It was not surgery, but it was expensive. It was a 6 month treatment of zoladex. Zoladex was suggested by my gynecologist because Lupron was back-ordered. Lupron is a 6 month dose (1 small injection under the skin over the abdomen each month) of hormone suppressant that’s designed to slow and stop the extra production of estrogen with the menstrual cycle. Zoladex was the same idea, also a 6 month treatment, just in 2 injections instead, once and then again, 3 months later. It took a bit of time but it worked. There was no change for a week and a half, and then my pains got really bad. I had a very difficult period and struggled for another week and a half, and then just like the gynecologist said, the periods stopped happening. I haven’t had a period in almost 12 months and each month my symptoms are milder and fewer.

I’m not sure how I ended up with it again after the removal of my fallopian tubes, but because I caught it so early and didn’t have surgery that time, it’s hard to say. In hind-sight, however, I don’t regret looking after it. Even though I’ve had to deal with it 4 times, not dealing with it any one of those times was not an option. Maybe a different course of action along the way would have eradicated the problem permanently, but I did the best I could with the information I was able to attain through research and conversation. I also based my decisions on my personal feelings about the various potential ‘side-effects’ of certain options. The decisions I made did remove the problem for a while each time and got me back to life.

Although I’m currently still experiencing pain, it’s almost never and way lighter, now maybe once a month with a couple of days of very light pain only a couple of times and for only a few minutes… and it is continuously digressing.

Chapter 5: The power of sharing

A health issue that is random in symptoms, difficult to pinpoint, and personal and embarrassing (no one likes to admit that despite the desire to have sex, it’s sometimes not ok to) can be very difficult to live with, navigate and figure out. There were many times when I felt like I was just weak and had to find a way within, to ‘suck it up’. This line of thinking is highly counterproductive. Convincing yourself to be tougher doesn’t actually make diseases go away.

Open up with a friend, write in your day planner or journal, talk with your partner. This will empower you to feel validated in your suspicion of something being wrong.

Call your doctor and make an appointment to discuss your pain and concerns. Only he/she can get the ball rolling toward an answer.

Talk with your partner. I know I said this already, but it’s really important. If you’re in a relationship that involves intimacy, your partner literally needs to know you’re suffering. If you do not share why you’re feeling down or exhausted from pain or having trouble even wanting to have sex, a wedge will begin to form between you, that will grow if not removed. If there is one already, and you relate to this, don’t worry, it can be removed. Lower your pride, take down your protective shield, even begin the conversation with an apology for shutting them out. Whatever it takes to start communicating. They will want you to be ok and it will deepen your connection to discuss something as difficult and personal as this. You can leave details out obviously, as you wish, but let them know the problem is real and needs to be addressed medically.

Chapter 6: Other forms of help

There are massage-therapists and physiotherapists who specialize in women’s health. My gynecologist referred me to one, as did a friend of mine who was very much helped by one, herself. I was in the middle of readying our house to sell, help our kids move out, plan our last stage of medical appointments before organizing everything we were keeping into a moving van and moving across the country. Also, I was retiring from my day job and I had decided to go with the zoladex treatment. But I did some personal research on my own to get a few ideas of how to help myself. If we hadn’t had so many things on our plate, I would have chosen to seek professional help in that venue. I’m very encouraged to know that there are multiple natural ways to address this issue. 

I found a stretch/breathing exercise that helps me, especially with the pelvic floor pain… the ‘bad pain’. A little research into pelvic floor exercises for pain led me to an interesting discovery. The same symptoms associated with weak pelvic floor muscles like pain during sex and incontinence are also symptoms of tight pelvic floor muscles. It’s important for all of us to do our Kegels to keep those muscles strong, but it’s also important to make sure they can relax. I started doing a specific gentle stretch/breathing technique while I was lying on the ground during a walk with my husband. The warning pain started and I hit the deck, lying on my back with my knees bent and feet on the ground and breathing as per usual to see me through. I decided to try the new one… breathing into my stomach, not my chest and holding for 5 seconds. This relaxes the pelvic floor muscles. When you breathe out, they return to their normal state. I was amazed to notice that even though the pain came on quickly and began accelerating right away, it lasted only 5 minutes and didn’t peak quite as high as usual. 

My husband obviously knew about my ‘bad pain’. He learned (because I told him) that when I felt a ‘warning pain’, I had less than a minute to lay down and relax and breathe. He also knew that it would last for 5 – 20 minutes. He would ask if he could do anything, would offer me a hot pack or massage, but wouldn’t push if I said no thanks. There were times when a hot pack helped, set low down on my groin area while I layed on the floor, and there were times when it didn’t, or I was on a walk with him. He further knew that I couldn’t talk during these episodes so he wouldn’t talk or ask questions, he’d just stay with me, or in the next room and let me focus on breathing through.

After that day, going forward, I used that breathing technique every time I had the ‘bad pain’. It helped. Every time. I also added it as well as 2 variations of it to my daily yoga-pilates-breathing workouts.

Another thing I did while I was still in the throws of intense difficulties, before the zoladex treatment started, was to increase and reduce my intake of certain foods, even at certain times of the day. As I mentioned earlier, regular menstrual difficulties were exacerbated by endometriosis. Gassiness and bloating were two that I could help with consuming less soda water, cruciferous vegetables and kale and spinach in the afternoon. I found I could still have them in the morning, but not after say, 1 pm. Increasing foods and herbs and spices that have anti-inflammation properties was also helpful. I have a lot of peculiar food allergies and sensitivities so food is always a multi-faceted, complicated, sometimes overwhelming issue, but it’s worth working out. There’s a whole project, figuring out what foods have the right nutrients and properties for what your individual needs are, when you include calorie needs for your level of activeness, whether you are trying to lose or gain or maintain weight, whether you are trying to heal from an injury, whether you smoke or drink or have an addiction to sugar, but it’s worth investigating. There are apps you can add to your phone and slowly build up an arsenal of equipment (information) you can use to help yourself.

I found making one small change like adding cinnamon or cocoa powder to my morning coffee, then, adding turmeric to my salad dressing were 2 small changes I was able to handle at once. Reducing sugar is also helpful, but be careful not to ‘punish’ yourself by saying “no more refined sugar!” This is very difficult and not likely sustainable long-term, ending with a moment of ‘weakness’, followed by feelings of guilt and failure and throwing your hands up and saying it’s no use!… and eating even more sugar. I was in a position because of my food allergies and sensitivities where the only refined sugar I consumed was in my home-baked cookies or muffins. I (we, actually) make all our food from scratch. However, I did reduce my refined sugar intake by eating more fruit. Certain types actually satisfy my craving for sugar as long as I eat them sorta regularly and am patient for results.

Looking after ourselves and each other should be a priority for each of us. But looking after each other is only possible when we’re looking after ourselves.