A Safe Space for You and Your Vagina
We sat down with Jess for a candid interview on her life with Endometriosis. This article is strictly from her personal perspective, in the hopes to make other women feel less alone. As always if something you read resonated with you, always seek the consult and advice of your physician. Or visit Endometriosis Network Canada for further information.
How long did it take for you to be diagnosed?
It took approximately. 4-5 years for me to be properly diagnosed. I was one of the lucky ones - I had an amazing specialist who is now Chief of Gynaecology and oversees a number of hospitals. One of the problems is that there is a very small chance of finding evidence via ultrasound, whether abdominal or internal. The only way to truly find physical evidence of endometrium tissue is via laparoscopy. During the investigation process there are so many tests that are run and a number of specialists you get handed off to – I cannot tell you how many times I was told that the pain was all in my head, that there is nothing wrong with me and I should see a psychiatrist. You can feel something is wrong and know in your gut that what you are feeling is not normal. It’s so hurtful to basically be told you are imagining things and pain that does not exist - you feel deflated.
What is one thing you feel is most misunderstood about living with Endo?
One of the biggest misunderstandings is that most people assume it’s just "bad period cramps" or a little more discomfort and bloating than the average person, but this is far from the truth. More times than not the pain is absolutely crippling. I have woken up in the middle of the night with tears streaming down my face because of how much pain I am experiencing, both abdominally and in my lower back. There have been times when the pain was so extreme that I have collapsed and physically have not been able to move, or I have thrown up so much that I popped a blood vessel in my eye. I constantly have a heating pad on to soothe the pain and in the process of trying to get a little bit of relief, have developed toasted skin syndrome - a red/brown rash that develops as a result of prolonged exposure to the heat without an actual burn - it almost looks web like.
The amount of bloating that occurs is also much more than the average bloat women experience with their menstrual cycle. I have had to purchase clothes specifically for when my Endo is bad because I cannot fasten my pants properly due to the size of my stomach and amount of pain. On top of it all, let's not get started on the fact that my menstruation can last up to 2 weeks.
Did surgery help? Will you have more?
I have had 3 laparoscopies, all of which they scraped the endometrial tissue. Typically, this helps for roughly 6 months and then I start to experience pain again and it eventually escalates.
I am talking with my physician now as to whether we will move forward with a 4th surgery due to a recent ultrasound capturing images of tissue on my ovary.
Has Endo interfered with your sex life?
Absolutely! At times there is a lot of discomfort or pain with sex, mostly when it is around the time of my period. Along with the pain, my abdomen is bloated, which then makes me feel self-conscious and makes me feel less attractive. It is so frustrating for me because there are times where I would feel like there was something wrong with me because it should be easy to be intimate with my partner and my partner shouldn’t have to worry about hurting me. Of course, there are other ways to pleasure one another, but it is hard to have to deal with those restrictions at times.
Also affecting my sex life was the Lupron and hormonal medication that I was taking; they lower the libido so urges and needs are not parallel with your partner. I have been off of the injections for 2 years now and I am back to feeling more like myself - it was a long battle for a healthy sex drive. It is a challenge but as important as sex is to a relationship, it is not the only thing, and you need to find a partner who will be patient and understanding and work with to support you, and not make you feel bad about something you cannot control.
How have you changed your lifestyle, diet etc. and does any of it help to control the pain?
Changing your diet and removing foods that can cause inflammation is really important. I can't say that I follow it all the time because I do love my coffee and wine! Unfortunately, I am one of those cases that experiences pain every single day - it is not only during my cycle. I try to stay active by doing a lot of walking since running or high interval workouts that I used to love is not something I am physically capable of right now. The only thing to help control the pain is to use a heating pad and my doctor prescribing me high dosages of pain medication. There are a lot of women, some of whom I have spoken to, that have had great success with adding more physical activity into their life and completely changing their diet – unfortunately for me it is a slow process.
What kind of treatments are available besides surgery? What kind of side effects come along with this treatment?
There are hormonal treatments that are available, although quite expensive if you do not have coverage. Since no other treatments worked on me and the results of surgery only lasted a short time, I was put on Lupron injections. In simple terms, it’s a hormonal treatment that "tricks your body" into thinking it’s in menopause, which prevents ovulation and periods. The downside is, you cannot be on this long term on its own because they do have side effects similar to women entering menopause which include developing osteoporosis, migraines and hot flashes (those are no joke)!! Progesterone and Estrogen therapy is also done in conjunction with the injections to try and minimize these side effects. I was pain free for 7 years - it gave me a quality of life I couldn't have imagined before. Unfortunately, I had to stop because it takes a long time to exit the system and if I ever wanted to have kids (if I can even have them) I had to stop. I also cannot forget the havoc it caused on my skin; it took me years to now have clear skin and I'm in my 30's.
There is a new medication that has been on the market for under a year now called Orilissa. It’s the first medication specifically for Endometriosis that has been released in the last 10 years or so. I’m only a month in so it’s to be determined if this helps my case.
In addition to applying heat, there is also a device on the market called Livia. It’s essentially a TENS (Transcutaneous electrical nerve stimulation) machine for pelvic pain/menstruation and is based on the “Gate Control Theory”, but transmitting pulses to different nerves in your body and when the nerves are stimulated, the gate closes and prevents pain signals from reaching the brain therefore preventing pain from being felt. This has not gotten rid of my pain completely but has helped take the edge off.
Is there anything else you want to share about living with Endo?
It's really important that women who are battling Endometriosis or are experiencing a lot of the symptoms but have not yet been diagnosed, know that they are not alone. There are so many different communities that have been developed to help give women support and help them through this process. The Endometriosis Network Canada is a great online forum that will help you find communities in your area that can be of assistance. Women need to know that this is not their fault, they did not cause this, there is nothing that you could have done to change it and you need to keep pushing and getting as many opinions necessary to get the answers you are comfortable with. You are not any less of a woman if you are not able to have children because of Endometriosis. It can be very easy to slip into depression and alienate those closest to you because they don’t understand, and you feel like it’s hopeless. It will get better.
What I found that really helped me was owning this part of my life, it is a part of who I am, and it is a part of my journey and story. It would be easy for me to give up and give into the pain but that is not a life anyone should live. Having family, friends, or a partner that you feel comfortable talking with is so important. I suffered in silence for a long time and once I found my person and let it out, it eased some of that stress. There are also a large number of events that go on throughout the year to help raise awareness - including the Endo March in Toronto taking place on May 23 & 24. This is a great way to get to know the community and become a part of a network where women support and help other women!
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