Lucjan B. from Worry Head is my next guest for the Chronic Illness Support Guest Blog! You can find information Lucjan has provided about endometriosis and supporting his wife M. with the illness. We hope you find this information helpful in your journey with chronic illness.
Tell us about yourself, what illness we are talking about today (definition, symptoms, etc.) and when you were diagnosed, how, what led to diagnosis, etc.
Today we are talking about Endometriosis which is a debilitating disease affecting 1 in 10 people across the globe. Endometriosis is a condition where tissue similar to the lining of the womb (endometrium-like tissue, called endometriotic lesions) somehow implants outside the womb. Endometriotic lesions, which are like blisters can be found anywhere in the pelvic cavity. They can be found on the ovaries, Fallopian tubes, the uterosacral ligaments and pouch of Douglas (situated behind the womb), and also on other organs in the pelvic cavity such as the bladder, the bowel, intestines, colon, appendix and recto-vaginal septum/rectum. It can also be found rarely in the liver, diaphragm, lungs, eyes, spine, skin and brain. The lesions bleed every month and there is no way for the blood to escape so this causes a lot of inflammation and pain, and can cause scarring and adhesions whereby the organs start to stick together. My wife was diagnosed at laparoscopy in August 2019, in London where we live. She was 44 years old at the time and was found to have stage 3 / 4 with deep infiltrating disease. The endometriosis was found on one ovary presenting as an endometrioma cyst, on her uterosacral ligaments, pelvic side-wall, bladder, pouch of Douglas at the back of the womb and she also had recto-vaginal endometriosis. She had suffered 6 years of painful, heavy periods, low back pain and sciatica, heartburn, IBS, bladder symptoms and anaemia due to the heavy bleeding. Sex was also painful for her and she had also started to suffer with her mental health due to the debilitating symptoms, she was previously a dance instructor and performer, but had to give this up. She attended her GP on multiple occasions over the years having ultrasound scans, a hysteroscopy and finally an MRI. The investigations up until the last year before diagnosis were always normal and then they found an endometrioma on her right ovary which prompted referral for an MRI, which was normal apart from the endometrioma, and then finally at laparoscopy she was diagnosed and treated with a mixture of excision surgery, ablation and she had a rectal shave where they shave the lesions away rather than cut in to the muscle tissue.
How long did your loved one suffer with symptoms before being diagnosed?
She had been suffering for 6 years with symptoms before she was diagnosed and she considers herself quite lucky as some women suffer up to 20 years before they know what is going on.
What treatments has your loved one tried? Did they help? Did they have side effects? Etc.
She tried the progesterone only pill as she could not take the combined pill due to migraines and her age, but she started to develop worse changes in her mood, which became worse than dealing with the pain so she stopped it. They tried her on antidepressants but she had a bad reaction and decided that she would rather have the pain, as it was more dangerous to play with her mood when she was already suffering with mental health problems. She tried the Mirena IUD but it was too painful and she had mood problems again. In the end she finally had surgery and after this she opted not to take hormones and focus on diet, exercise and keeping her stress levels as low as possible.
What are five must haves that your loved one can’t live without that help them cope with their chronic illness (Ex. book to read, coloring book, heating pad, bath, etc.)?
Husband, Chiropractor, Psychotherapy, Dr Google, and Books
Does your loved one have other illnesses? If so, would you like to mention them? What are they?
My wife suffers with IBS and is currently being investigated for fibromyalgia. She also has Obsessive Compulsive Disorder which she has had on and off throughout her life when she has been under stress. Obviously with all that has happened and with the current Coronavirus outbreak this has triggered her OCD.
What is something you wish you would have known when your loved one was diagnosed?
The right specialist. I think my wife wished she had known that she had had this disease sooner, as maybe it wouldn’t have gotten to such a severe stage before her first surgery, but on the other hand she didn’t experience any symptoms until she was 38.
How does it affect your loved one's daily life?
She cannot plan much, as she never knows if she will be up to the task. She feels guilty a lot due to having to cancel arrangements last minute. When she has symptoms she struggles to concentrate on her work and get her normal daily activities done and feels completely drained and exhausted by the evening. She doesn’t sleep well either, constantly getting up in the night due to pain, bleeding or IBS symptoms.
How is your loved one doing now with symptoms etc.?
Since the surgery her periods are not as painful and heavy, she still has digestive issues normally around ovulation and her period, but she is now experiencing flares of new widespread pain and fatigue hence the reason she is being investigated for fibromyalgia.
Is there any other information you would like us to know about endometriosis?
The effect of endometriosis on couples regarding intimacy, financial impacts and also fertility issues. Couples dealing with endometriosis have huge strains on their relationships firstly with regards to intimacy as with some women (my wife included) penetration can be very painful or can trigger pain and new ways of having an intimate relationship need to be explored. Not to mention the fact that even if women with endometriosis don’t experience painful sex, the other symptoms can drain them of energy and then sex is the last thing on their mind. Financially, it can be difficult if one partner cannot work as much or sometimes cannot work at all due to their debilitating symptoms and then there is the issue of fertility. This of course doesn’t affect all women with endometriosis, but in those that it does it can devastate their lives as well as their partners’. Unfortunately, my wife and I never managed to conceive, but she was struggling in pain during the first 5 years of our marriage, so that was the last thing on her mind at the time. We don’t know if she would have been able to, but now she is 45 we have both accepted that children for us are sadly not going to be possible. This is also a very painful experience to have to go through, as a woman you are almost mourning that you have lost and might have been. This illness is chronic and invisible and the women who suffer are very strong and determined women who tend to cover their symptoms and carry on when inside they are really struggling. This is why it is important to raise awareness regarding this illness so that people can be more understanding of what you may be suffering on a daily basis and not be so judgmental.
What piece of advice do you want to give readers?
The most important thing is having the right support around you, reaching out to others whether it be partners, friends or support groups when you are having a bad time. Also, it is important to have some self-compassion and maybe not be so strong and determined. Sometimes you need to let go and just rest and do some self-care minus the guilt. You must remember that you are not this illness, you may have to modify your life, but you can still do the things you love even if not so often, and you can still be there for the people you love, but sometimes you deserve a break. When you suffer from chronic illness you appreciate the little things.
How can someone show support (awareness colors/ribbons, etc.)?
Wear a yellow ribbon for endometriosis, share information on endometriosis and promote research for a cure.
How can listeners connect with you (social media, website, etc.)?
Guest Chronic Illness Blog coming soon! Guests will be asked to provide information about their illness and must haves while experiencing pain and other symptoms.
Samantha Bowick, MPH is the author of "Living with Endometriosis: The Complete Guide to Risk Factors, Symptoms, and Treatment Options" and "Living with Alpha-1 Antitrypsin Deficiency" as well as a fellow sufferer of multiple chronic illnesses and patient advocate.Write something about yourself. No need to be fancy, just an overview.