A woman with adenomyosis said she was in so much pain that she asked for a hysterectomy at age 34 after doctors thought her symptoms were anxiety or loneliness.
Vicki Hamlin, 38, from Cheltenham, became seriously ill in October 2016 after a routine gynecological procedure to remove abnormal cells, but was not diagnosed with adenomyosis for another year.
Adenomyosis occurs when the endometrium grows into the muscular wall of the uterus, causing prolonged heavy periods, severe menstrual pain, bloating, and abdominal discomfort. The condition is similar to endometriosis, where tissue that looks like a uterus grows outside of the uterus, near or attached to other organs such as the ovaries, fallopian tubes, bladder, or intestines. the only known treatment is hysterectomy.
Ms Hamlin said: “This is my seventh year at home because I also have Lyme disease. Until 2016, I had no health problems. I was very active. I ran a marathon and cycled from London to Paris. I traveled for work. I worked in the luxury travel industry, so I traveled a lot in Asia and India. I was in good shape, active and healthy.
“It all happened after a routine gynecological procedure because I had abnormal cervical cells. Since I have been taking combination pills for about 12 years, they mask many of the symptoms. When I got rid of it and went through this routine, it activated almost everything that was dormant.
She spent about four months in and out of the hospital and was brought in every time she ovulated or had her period. “I had so many different symptoms,” she said. “I started to have blood clots. I had very severe pain in my back and legs. I passed out during a bowel movement, I could not empty my bladder. Migraine, severe rectal, vaginal pain. It seemed to go from zero to 100, apparently without any prior symptoms.
At first, the doctors thought she had a tropical illness because she had just returned from a trip, so she was isolated. She was told it could be anxiety or IBS. [irritable bowel syndrome] but endometriosis was never suspected.
She said, “They told me all sorts of things. I was told that I would acclimatize even though I am British. I was told it was due to anxiety and irritable bowel syndrome because I have so many digestive issues. No one has ever mentioned endometriosis.
“I just moved into a new apartment, like I’m going through a very exciting period in my life and I’ve been told that my pain is mostly due to loneliness because I live alone. I was told all sorts of things, and basically they just fired me.
A friend said it could be endometriosis, so Ms. Hamlin went back to her GP, who also “discharged” her and said it couldn’t be endometriosis.
She said: “They just said they would not continue the investigation, but I was in the hospital the whole time. I asked to be referred to a gynecologist and they told me to wait 15 months. So I went privately to a local gynecologist who was recommended to me.”
In January 2017, she turned to a private general gynecologist for help. He referred her for a laparoscopy and it was “massive endometriosis” but he kept it because he didn’t have enough experience to remove it.
She said: “I was stunned when I was diagnosed with this disease, which I knew absolutely nothing about. I didn’t get any information, no instructions, just this statement that said, “Yes, I have endometriosis, but we haven’t done anything about it.” I was alone. There was no support, no guidance.”
In March 2017, she visited Endometriosis. “My consultant said that endometriosis may have been dormant since I was 18 years old. Now I’m 38, and I got sick when I was 32,” she said. He operated on her within two weeks.
“It was a completely different experience. I caught myself crying because I was being listened to, because I thought everything I said to him was normal. He heard it so many times. Since he was very good in his field, many people turned to him last. They went door to door looking for answers, so he was used to dealing with very difficult questions.
“He was just empathetic, knew everything about my intestines, and all the symptoms were normal for him. He made me feel that I was not crazy, that my pain was real. He just confirmed everything. “I was told for months, ‘You’re okay, it’s in your head, it’s fear.’ It’s just very different from how I was treated, I was treated with respect.”
Later, in October, after the pain returned, she underwent another operation. “My intestines wrapped around my ovaries. It stuck to the side wall of my pool and I would have had more grip. So he diluted everything.
“And then, in October 2017, he diagnosed me with adenomyosis based on scans of my uterus alone. It was the wrong size. He was much bigger than he should be. There was a lot of inflammation.”
Patients with adenomyosis told I They often feel “forgotten” in conversations about women’s health because the condition is so little known and the National Institute for Health and Excellence (Nice) has not charted a specific treatment.
Some of the NHS England Trusts and the Scottish website NHS Inform have information on adenomyosis, but NHS Digital does not have a website covering the common condition, including sections on “endometriosis” and “heavy periods”. After I contacted the Department of Health and Human Services and promised to “transform the women’s health content on the NHS website and add additional pages for conditions such as adenomyosis to make it easier to find relevant information.”
The counselor offered Mrs. Hamlin several options. However, hysterectomy was the only option to remove the growth. She began taking injections to disable her ovaries for six months to see if it would ease the pain before she was left with no choice but to have a hysterectomy.
When the pain persisted, she decided to have a hysterectomy at the age of 34.
She said, “I don’t have children, so it was a difficult decision. This [the injections] helped me because I didn’t want to have a hysterectomy just because I knew I hadn’t tried everything in medicine before. But at that moment I was also in despair. My surgeon knew how to take things slow. I sat in front of him several times and said “take it all away like I want the pain to go away” and he was the one who made me think about taking my time; it’s an irreversible decision.”
“When you’re in so much pain that you can’t think clearly, you just want it to go away. Desperate is really the only word I can think of – I emailed him at 2am like you’re getting what you need.
She decided to keep her ovaries because they were healthy, which made it possible for her to freeze her eggs later. However, she no longer sees children as an option. She said, “I have Lyme disease. I was housebound for seven years. I just have too many other health issues to really take my mind off this and I’m not financially able to do it right now.”
At the time, she doubted that a hysterectomy was the right decision. She said: “But I have since gotten a second opinion and given my photos to other consultants and they agreed they would have done the same. It helped me mentally confirm that I did the right thing.
Ms. Hamlin was pain-free for 18 months, but as her ovaries began to fail, her doctor gave her estrogen, which led to further growth. Now she has developed a rare form of endometriosis, in which a nodule grows on the roots of the sciatic nerve.
She has an appointment with another specialist next week and will likely need additional surgeries.
She said, “I was paralyzed in my right leg where a nerve was damaged and the pain returned to pre-hysterectomy levels.” I’m not saying that’s why I’m bedridden. It’s more like the Lyme disease I’m dealing with.”
She said her mother, brothers, and counselor “let her move on,” but over the years, she lost most of her friends. “I think people assume that the longer it takes, the easier it will be, but it’s actually harder. The longer you go through something, the more it wears you down and just breaks you down. But mostly I try to keep up. Ruthless is the first word I would use to describe it,” she said.
A spokesman for Nice said: “Heavy menstruation can have a serious impact on well-being and quality of life. Adenomyosis is covered in our guide to heavy menstrual bleeding. This is a useful and actionable guide that will help healthcare providers understand the cause of heavy periods and the treatment options available.”
A spokesman for the Department of Health and Welfare said: “Last summer we published the first ever Government Women’s Health Strategy for England to improve the health and well-being of women and girls across the country and to improve health care. the system is listening. to all women. It aims to update the women’s health content on the NHS website with additional pages for conditions such as adenomyosis to make it easier to find related information.
Source: I News
I’m Raymond Molina, a professional writer and journalist with over 5 years of experience in the media industry. I currently work for 24 News Reporters, where I write for the health section of their news website. In my role, I am responsible for researching and writing stories on current health trends and issues. My articles are often seen as thought-provoking pieces that provide valuable insight into the state of society’s wellbeing.