The Ugly Truth: PCOS and Endometriosis

Polycystic Ovary Syndrome (PCOS) is a very common disease which, according to Bon Secours Health System, can cause “period problems, reduced fertility, excess hair growth and acne”. Globally, up to one in ten women suffer with this condition and many are overweight. Treatment includes weight loss (if you are overweight) and lifestyle changes in addition to treating the individual symptoms.

The exact cause of PCOS is not clear, but there are some factors that might play a part. This includes the hormone insulin which controls your blood sugar level. Bon Secours states that women with PCOS have ‘insulin resistance’ which means that cells in the body are resistant to the effect of a normal level of insulin. They say that “more insulin is produced to keep the blood sugar normal. This raised level of insulin in the bloodstream is thought to be the main underlying reason why PCOS develops. It causes the ovaries to make too much testosterone”. 

Another factor is your luteinising hormone (LH), which is made in the pituitary gland. It stimulates the ovaries to ovulate and works alongside insulin to promote testosterone production. According to Bon Secours, a high level of LH is found in about four in ten women with PCOS.

PCOS may run in some families, so there are the hereditary factors to watch out for. Your weight is also another factor to keep in mind. Being overweight or obese is not the underlying cause of PCOS. However, if you are overweight or obese, excess fat can make insulin resistance worse.

Another similar condition is endometriosis, which one can often have at the same time as PCOS. This study in 2015 found that women with PCOS are more likely to be diagnosed with endometriosis.

According to the World Health Organisation (WHO), endometriosis affects “roughly ten percent (190 million) of reproductive age women and girls globally”. It’s a disease where tissue similar to the lining of the uterus grows outside the uterus. Endometriosis typically affects your reproductive organs such as fallopian tubes, ovaries, uterosacral ligaments, peritoneum and anywhere between the bladder, uterus, and vagina. It can also affect areas outside of the pelvic cavity such as your intestines and lungs.

When you have endometriosis you can experience severe pain during periods, bowel movements and/or urination. You can have chronic pelvic pain, abdominal bloating, nausea, fatigue, and sometimes depression, anxiety, and infertility. There is no known cure for endometriosis, and treatment is usually aimed at controlling symptoms.

These conditions are not spoken about in the media often enough. There is a lack of awareness about the impact they have on the lives of women not only in Ireland, but across the world. So many women reached out to me via social media when I said I was going to write this article and I want to thank every one of them. Their stories are moving and I am so happy that these brave women decided to share their journeys with me. Below are just some of the stories I received.

Photo by Vitalii Pavlyshynets on Unsplash.

Meet Sarah Jane

Sarah Jane is a 27-year-old media success co-ordinator from Laois. She currently lives in Dublin. She suffers from PCOS, endometriosis and she has recently been diagnosed with adenomyosis. According to Sarah Jane, her diagnosis journey was a “very long one”. Since she was nine years old, she suffered from lower abdominal pain which was often brushed aside as IBS or rumbling appendix. It got worse during her teenage years when she started menstruating. After many trips to A&E with chronic pain over the years, in 2016 Sarah Jane was operated on and was finally diagnosed with PCOS. After four surgeries, she was diagnosed with endometriosis. After her ninth surgery with a specialist in the UK (her second surgery with him) she was diagnosed with adenomyosis.

Sarah Jane has experienced so many symptoms over the years, but the biggest one for her was pain: “You’ll often find me doubled over in pain, clutching my stomach. It often feels like pressure, something throbbing, as if something is about to burst. The pain is sometimes deep and heavy. Sometimes it feels as though someone is stabbing me”.

She has also experienced irregular periods, weight fluctuation, hair loss resulting in her having to wear wigs, acne, chronic fatigue, sweating, mood swings, anxiety, depression and brain fog. To manage her symptoms, Sarah Jane uses a walking stick when the pain and sciatic gets overwhelming, she is on metformin for her PCOS since 2018, she uses hot water bottles, she eats gluten free and manages her sugar intake. She hopes to freeze her eggs over the next few years, in order for her to start a family.

Her own family has been very supportive and Sarah Jane describes her mother as “her rock”. To read more about Sarah Jane’s journey, check out her blog.

Meet Georgina

Georgina is a 34-year-old NHS programme manager from London who suffers from PCOS and endometriosis. She was 19 when she realised something was wrong. She had a great boyfriend but sex was becoming painful and uncomfortable. She went to her GP and had a number of tests, including a smear test, blood tests and an ultrasound. After some of these came back abnormal she was referred to a see a specialist.

According to Georgina, the specialist appointment “wasn’t the most positive experience”. She was treated by a young male doctor who “hurried” her through the appointment and confirmed the PCOS diagnosis. “He was painfully dismissive,” she said. Georgina opted to go through this journey alone, to save her family from worrying. After that appointment, she had laparoscopy surgery to find out what was going on. At the follow-up appointment after this surgery, Georgina was told she had endometriosis: “I was stunned into silence when they told me that there was a high risk that this will impact my ability to have children. I stumbled out of the consultation room to be greeted by rows and rows of happy pregnant women and partners waiting for their appointments”.

Georgina spent seven years after that trying to find the right treatment. She experienced bad skin, cysts the “size of grapefruits” and weight gain. Recently, she started taking metformin to help her lose weight, as nothing was working despite her regular exercise regime and clean diet. Eight years after her diagnosis Georgina came off the pill, only to be greeted by a cancer scare. She was experiencing severe pelvic pain and so went to the GP for blood tests and a colonoscopy. When she went to the next GP appointment, they showed her the computer – “Cancer 2 week referral” guidelines were written on the screen. She was sent for an urgent MRI that came back all clear but showed a “complete mess” in her pelvis: “My left ovary was stuck to my uterus, sigmoid colon and rectum. The endo had come back bad, probably triggered by me coming off the pill”.

She required complex surgery to fix these issues which went well, and they inserted a coil to preserve her fertility. At times, Georgina feels like she has a dark cloud that follows her around regarding having children: “I am 34 now and not in a relationship, my dodgy biological clock is ticking louder than ever. It’s also hard to tell people that I feel like a complete failure as a women if I can’t have a family”.

Meet Sam

Sam is a 33-year-old occupation communications officer from South Tyneside, England. Sam had “excruciating periods” from the age of 13, but wasn’t diagnosed with endometriosis until she was 28. When she came off contraception as an adult, her symptoms became unbearable: “I could barely walk with the pain. It took around ten doctors and hospital visits before I was taken seriously”. Sam then had surgery and she now uses the contraceptive pill to manage her symptoms, as well as regular pain medication, hot water bottles and lots of rest.

Sam has experienced fertility issues: “It took me around two years to conceive my second child”. Her family has been very supportive during this journey: “My husband was my rock, and advocated for me with medical professionals when I felt unable to. My parents and in laws are also really supportive and help out with the kids”.

Meet Robyn

Robyn is a 32-year-old historian from county Down with a PhD in history. She has endometriosis, PCOS and suspected adenomyosis. Due to how long it took to diagnose her endometriosis, it damaged some of her other organs. Therefore, she also has interstitial cystitis and functional and structural bowel problems directly related to endo. Her periods started when she was 12 and according to Robyn they were “really heavy and painful right from the beginning”. When she was 14 she went on the pill and that gave her a measure of control over her periods. Robyn was misdiagnosed with IBS, anxiety, growing pains and was constantly told it was all in her head. “When I turned 18 I finally got referred to a gynaecologist and had my first laparoscopy. They inserted a Mirena IUD during it and told me after that they had found endo but had lasered it off so I was now cured. I had about a year pain-free, with no periods thanks to the Mirena, I was at university and doing really well. Then I collapsed a few days after my 20th birthday. The pain was back but it wasn’t just during my periods anymore, it was daily,” she said.

Robyn had another laparoscopy and they found that her pelvis was covered in endometriosis. She had further surgery to excise it from the outside of her uterus, around her bladder, in the vagina, rectum, pouch of Douglas and utero-sacral ligaments. A tiny amount was left on her bowel and she needed further surgery two years later to separate her uterus from her colon which had become stuck together. In 2019, just after she turned 30 Robyn started noticing hormonal changes and symptoms like hair growth, acne and weight gain: “It felt like I was a teenager again, my hormones were all over the place and I was constantly greasy”. 

To manage her symptoms, Robyn sees the chronic pain department, she takes painkillers every day along with a wide range of other medications for various conditions. She has lidocaine infusions every six months, she spreads out any activities and people in her life know that she needs time to rest. She limits acidic food, she enjoys hot baths with Epsom salts to relax her muscles, she has heating pads and hot water bottles on standby and she enjoys reading books on her Kindle, knitting and sudoku to keep her mind busy.

Robyn’s friends, family and boyfriend have been very supportive during her journey. She describes her mother as her main support and strongest advocate. “The wild hormone changes are a challenge but I can now recognise mostly when I’m having a grumpy day or a weepy day or an angry day and warn the people closest to me,” she said. 

Meet Steph

Stephanie is a 25-year-old teacher from Toronto, Canada. She suffers from PCOS and was diagnosed about five years ago. Her biggest symptoms are excessive hair growth, weight gain, acne and very painful periods. The excessive hair growth has been the biggest nuisance for her. No matter what she did, she had “so much hair growth” on her face and neck. She had always attributed her steady weight gain, despite diet and exercise, to genetics. However, according to Steph, it is likely a mix of PCOS and unrelated thyroid issues. Steph had a hormonal IUD for eight months in 2018, however it did not work out for her. Her periods were two weeks long for the eight month period and she experienced discomfort constantly. She now uses contraceptive pills and finds they work well. Since 2016, Steph has opted for consistent laser hair removal on her face. She manages her diet and remains on oral contraceptives. Her family, especially her sister, and friends have been really supportive throughout her journey.

Meet Emma

Emma is a 23-year-old Covid-19 vaccinator and healthcare assistant that lives in Newcastle upon Tyne. She first started getting symptoms of PCOS when she was around 14 years old; missed periods, odd hair growth, depression, cysts that were “so painful” and acne that was covering her face, neck, back and shoulders. Although she had nearly all symptoms of PCOS, not one GP ever mentioned it being a possibility.  At the time, Emma as very sick with Inflammatory Bowel Disease so, according to her, all her symptoms could have been masked by the side effects of steroids she was on frequently as well as all the biological drugs. 

When she was 18, Emma noticed a major difference with her body, around the same time she had major surgery to remove her large intestine and had an Ileostomy placed. She started gaining weight which in her case “wasn’t a bad thing”. However, she found she couldn’t control her weight. She was addicted to sugar and struggled with fatigue. She always had irregular periods but after four months of no periods, she knew something was wrong. She googled PCOS and when she read all the symptoms, each one resonated with her.

At the same time however, Emma had to have another major surgery to remove all the leftover diseased intestine including her rectum. This unfortunately caused her to have complications with her uterus and vagina which she believes made her PCOS worse. Her periods became very irregular. She scheduled an appointment with her sexual health clinic and then was seen by a doctor who referred her to the gynaecologist after a smear test. She was diagnosed with PCOS: “I felt like a weight had been lifted off my shoulders, I finally had an answer to all my problems. I was offered an IUD which I refused due to my complications of my surgeries and was advised to lose weight to get me back to a normal healthy BMI as well as reduce my sugar intake”. 

In the future, Emma would love to have children. Her gynaecologist has told her that IVF may be a possibility: “Talking to others with the same problems and diagnosis has helped me so much, it’s the knowing that you aren’t alone and lonely going through this that has helped me the most”.

Meet Emily

Emily is a 25-year-old PR manager from Cheshire. She suffers from PCOS and the main symptoms she experiences are weight gain, excessive hair, mood swings and no periods. She had been on birth control since she was 18 so is not sure how long she has the condition. According to Emily, it has gotten progressively worse over the past few years. When she was in university she came off the pill to give her body “a bit of a break”. She didn’t get her period for seven months and was passed around from doctor to doctor as they didn’t know what was wrong. When diagnosed, Emily did not have surgery and she now regulates with the contraceptive pill and folic acid.

Emily tries to eat as healthily as possible, but during COVID-19 she found that her symptoms have “definitely got the better” of her. She opts for laser hair removal to tackle the excessive hair growth on her face. When Emily was diagnosed she had an honest conversation with her doctor and she is aware that having PCOS will make it harder to conceive: “I do think knowing that has also changed my opinions or feelings on having kids, I think as a bit of a self-preservation tactic. I also think this makes you so much more sensitive when people say things like ‘you’re next!’ when there is a baby around”.

Strandhill beach, Sligo. Photo by me.

In conclusion, I hope this article will help other women out there who may be struggling. If you would like to read more about PCOS click here. For information about endometriosis click here. As mentioned in the article, if you would like to find out more about adenomyosis then click here. There are many charities and helpful websites out there, it’s just a matter of finding one that is right for you.

Published by Anna Cullen

Substantial experience in radio, digital and print journalism.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: