Last year, actress and writer Lena Dunham put a spotlight on a condition that affects millions of women worldwide: endometriosis. The 32-year old shared on fashion and lifestyle magazine Vogue her personal story of her long struggle with endometriosis and her decision to have an hysterectomy - a surgical procedure whereby the uterus is removed. According to the essay, she chose to have the procedure after years of crippling pain, eight surgeries, and no effective treatment.
With Endometriosis Awareness Month coming up, we wanted contribute our part to raise more awareness about a medical condition that is often misdiagnosed and hence, mistreated. Let us start with saying that a hysterectomy is not the definitive treatment for endometriosis.
Endometriosis is a condition where a tissue similar to the lining of the uterus (called “the endometrium”) is abnormally found outside of the uterus. The condition causes this tissue to grow on the ovaries, the fallopian tubes, or the outer wall of the uterus. In some cases, the cells even grow in other parts of the body. Persistent pain and unusual vaginal bleeding is the result.
It is estimated that 176 million women - or 1 in 10 - live with endometriosis globally. Astoundingly enough, it takes on average 10 years to be correctly diagnosed. Misdiagnosis is largely due to the fact that the most common symptoms (including pelvic pain, painful periods, painful sexual intercourse and abnormal bleeding) are often belittled or blamed on normal aspects of ‘being a woman’.
Unfortunately, there is no definite cure for endometriosis, but there are treatments that can help minimize the symptoms associated with it. Treatments for endometriosis-associated pain include hormonal therapy (birth control pills, progestin, and danazol treatment), drug treatment with analgesics, anti-inflammatory drugs or narcotic/opioid analgesics, and surgical treatment, including laparoscopy to remove lesions and scarred tissue, and laparotomy. Additional treatments such as pelvic-floor therapy, massage therapy, heat therapy, acupuncture, and exercise might be helpful. Important to know: it might be necessary to try different treatments, or a combination of them, to understand what works. Every woman is different and so is treatment for endometriosis.
A hysterectomy is a surgical operation to remove a woman’s uterus. As the lesions caused by endometriosis are extra-uterine, which means outside the uterus, hysterectomy can’t fix the condition as remaining tissue or lesions on other organs can still cause inflammation and pain over time. A hysterectomy only removes the uterus (and the cervix, if it's a total hysterectomy), not the ovaries, so as long as ovaries and hormones are there, any endometrial tissue can bleed again and cause pain. Taking out the ovaries and the uterus can help relieve pain, however, there’s no guarantee that the pain relief will last.
The only case where a hysterectomy may be working is for another condition called adenomyosis, when the endometrial tissue grows into the muscle layer of the uterus. However, this type of surgery is usually not the first line of therapy.
26-year old from Nuneaton, England, Colette moved to Berlin, Germany, a couple of years ago. Health Manager at Qunomedical, she helps patients all over the world find high-quality and affordable medical treatments every day. Below she tells her deeply personal story of her life with endometriosis and the long way to correct diagnosis.
"I spent over 9 years seeing multiple doctors and nurses in different doctors offices, clinics and hospitals. I was finally diagnosed in late 2016 with endometriosis. In Berlin, I made an appointment to see a gynecologist because I knew I needed a smear test due to my age. I had never been able to see a gynecologist before as I couldn’t get a referral in the UK.
This single appointment changed a lot for me. It was the first time a doctor had truly listened to me, asked questions about the symptoms I had and told me it sounded like I had endometriosis.
I was immediately placed in Visanne, a hormone medication to induce the menopause, so I wouldn’t have crippling pain for 3 to 7 days a month and to try and shrink the suspected endometriosis before having a laparoscopic surgery for definitive diagnosis. I would have never thought that being in new healthcare system in a different country would make such a difference. It changed my life.
I had been seeing doctors about my symptoms since I was 15 when my periods started. Something wasn’t right. I was in agony.
I could menstruate for anything from 6 to 12 days a month and I was having terrible back pains. I was told it was normal menstruation. I was told I had pulled a muscle in my back, told it was just my depression that was causing pseudo pain, told that I might have irritable bowel syndrome, told that I may have bronchitis. I was even checked for appendicitis.
The most crushing response from a doctor was that I was over exaggerating the pain, all women go through this.
When I was 18, I ended up in such severe back and pelvic pain that I was put on tramadol, an opioid medication. I was given no scans, no assessment, just told I had probably pulled a muscle. I look back on this and cannot understand why I was given such strong medication without testing. One of my lowest points was a few months before I moved to Berlin. I saw my local nurse at the doctor's office to discuss contraceptive options. I explained to her how much pain I was in and that I would like a hysterectomy and to be sterilized. I wasn’t coping, I was begging for help and was told I was too young at 23 to make this decision.
I needed to know if I had endometriosis. It was eating me up inside and I needed an answer, one that I had been begging for years for. I had laparoscopic treatment in January 2017 for diagnosis where they managed to remove the endometriosis they had found.
The laparoscopic surgery was the only real diagnostic option available for me. I went to Charite Hospital and their Centre for Endometriosis. I had never had a surgery before, let alone in a country where my language skills were not medically proficient. My surgeon, doctors, anesthesiologist and nurses all spoke English to me. They made me feel as comfortable as possible in that situation. I cannot thank them enough for that.
When I came round from surgery in the recovery room, all I could say over and over again was ‘Did they find it?’ When I heard the words ‘yes, they found it’ I cried. The relief was overwhelming, knowing that I had been right, that I had really been in pain all of those years.
I felt vindicated. That feeling alone, having my question answered would have been more than enough for me to justify having that surgery. But it reduced a lot of the symptoms I had been having for years. In the year since, my migraines have become rare, I have less severe pelvic pain, my mental health has drastically improved and sex has become drastically less painful.
My most difficult symptoms are still the lower back pain and the pelvic pain. I have in the last few months been seeing a specialist in pain management. My pain was assessed on the Gerbershagen Staging as stage 3, the highest you can get. I have had constant back pain for the last 10 years which can flare up with devastating effects.I also get severe pelvic pain, but since surgery, hormone therapy and strong pain medications, it is less frequent than before.
Pain affects every part of my life. It affects my sleep, my work, my social life, general household chores, my self esteem, relationships and at times even my ability to walk.
I see 6 specialists at the moment. I use a TENS machine, a heat pad, I have corticosteroid injections, massage, chiropractic treatment, strong painkillers and I have recently completed a course of physiotherapy. This improved the migraines I was having and quite a bit of the pelvic pain, but sadly my constant back pain has persisted.
My pain at the moment is 80% of the time easily manageable or at a level I am used to and can continue to live my life. This may sound to some as quite bleak, but for me, with only 18 months of treatment, this is a huge difference.
When the story about Lena Dunham’s hysterectomy broke, I was surprised. My endometriosis specialist suggested that a hysterectomy is not a treatment option for endometriosis alone. I had considered it before, I had thought it may cure me as there is a widespread misconception that it helps. In my own research, speaking to endometriosis specialists and to women with endometriosis who had a hysterectomy, I found it did not help unless you had adenomyosis. The way some media channels then reported the story was irresponsible. Making out that it was a cure or a treatment option. This spreading of misinformation makes finding the right treatment for patients newly diagnosed more difficult. Lena Dunham has been brought up before for spreading misinformation about this disease when she incorrectly said that 3 months of Lupron injections was as good as excision surgery. Admittedly she apologies later for this, but the misformation was already out there, the damage was done.
I hope that women now considering having a hysterectomy will seek specialist medical opinions before making a decision on this surgery.
If I could go back and talk to my 15 year old self, I would have told her to keep pushing the doctors. Ask to see a gynecologist the second I realised my menstruation was lasting much longer and much heavier than my friends. To have believed in myself, that the pain I was feeling was real. I would tell myself to sit my family down and be honest with them, that I wasn’t coping with the pain I was in.
Most importantly, I would tell myself not to be quiet or ashamed but to speak up and demand help.
The most heartwarming sentiment I have found is when someone tells me ‘I have read up on Endometriosis and I am here for you’.
My advice to young people and their parents or guardians: educate yourself on menstruation, on endometriosis and on other reproductive issue illnesses.
Sadly it's not something covered in sexual education lessons at school and its wildly misunderstood in the general medical community. If you notice any of the symptoms, or several of them in yourself, demand a referral to a gynecologist and find a doctor that actually listens to you. You deserve to be heard. If you notice the symptoms in a friend, a family member or a partner offer to listen to how they are doing and suggest seeking medical advice. If you find out that someone you know has Endometriosis, the most supportive thing you can do is to listen to them and ask them how you can support them.
The reason I was drawn to work at Qunomedical, was that they are changing the way we can access healthcare.
I enjoy talking to my patients, because I understand what it means to be on the other end searching for healthcare, for treatments and somewhere you can get an appointment to suit your time restrictions and budget.
Helping my patients find the treatment they are searching for, makes me feel like I am making a difference. I am extremely lucky to work here. There is no judgement about my health struggles, I am given flexibility to attend my medical appointments and the genuine support from my colleagues makes working here a pleasure. This has been the first place I have worked where I can be open with the fact that I have endometriosis."
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