It is estimated that 1 in 10 people in the UK are currently living with Polycystic Ovary Syndrome (PCOS) and Endometriosis. Despite how common both these chronic health conditions are, there’s still a lot of misinformation and stigma surrounding their symptoms and causes.
Many people are misdiagnosed for years, feeling isolated, depressed, ashamed and disconnected from their bodies.
Wrongfully, they’re also often disregarded as not being a serious health issue due to lack of awareness among GPs, leaving many people misdiagnosed for years and feeling isolated, depressed, ashamed and disconnected from their bodies.
In this blog post, we shine a light on these under-discussed conditions, their symptoms and the treatment options available.
What is Polycystic Ovary Syndrome?
Polycystic Ovary Syndrome (PCOS) is a common condition caused by an imbalance of hormones including insulin and excess androgen (referred to as the ‘male’ hormones but these are present in all identities and vital for everyone’s normal reproductive function).
This hormonal imbalance affects how a person’s ovaries function, disrupting ovulation and the menstrual cycle. Each month, the ovaries make and release an egg as part of a healthy menstrual cycle. With PCOS, the high levels of insulin cause the ovaries to produce too much testosterone which interferes with the development of the follicles (the sacs in the ovaries where the eggs develop) and prevents ovulation from taking place as it should.
According to the NHS, more than half of the people affected by PCOS do not experience any symptoms but if they do, these become apparent during late teens / early 20s and can include:
- Irregular or infrequent periods
- Skin conditions such as oily skin or acne
- Unexplained weight gain
- Difficulty conceiving due to irregular ovulation
- Excessive facial and body hair due to excess androgen (hirsutism)
- Thinning hair loss on the scalp
- Darkening of the skin particularly around the neck, groin and underneath the breasts
What causes PCOS?
The cause of PCOS is unknown however it is thought to be passed down genetically in families.
Treatment & Diagnosis
PCOS can go undetected for a long time because symptoms can vary from person to person and in some cases, there are no symptoms at all.
A diagnosis is usually made based on symptoms (often irregular or infrequent periods), blood tests and scans. Once diagnosed, you may be treated by your GP or referred to a specialist gynaecologist or endocrinologist to discuss how to best manage your symptoms, the recommended lifestyle changes and any necessary medication that might be right for you.
Although there’s no cure for PCOS, it can be kept in check with symptom-based treatment.
Although there’s no cure for PCOS, it can be kept in check with symptom-based treatment. It can often be treated with birth control pills because they contain hormones that address some of the common symptoms, but everyone’s course of treatment will vary, depending on their individual health risks.
Many people with PCOS manage their symptoms without medical intervention by exercising regularly and maintaining a healthy lifestyle.
What is Endometriosis
Endometriosis is the name given to the chronic and often debilitating condition where cells similar to those found in the lining of the womb grow outside of the uterus, such as the ovaries and the fallopian tubes.
These cells react to the menstrual cycle in the same way as those in the womb, shedding and breaking down each month, however, there is no way for this blood to leave the body which can cause inflammation, pain and the formation of scar tissue.
As with PCOS, the symptoms of Endo can vary from person to person. Some people experience mild symptoms, but others have moderate or severe symptoms.
According to the NHS, the main symptoms include:
- Pain during or after sex
- Pelvic or lower back pain
- Severe period pain
- Pain when passing urine
- Discomfort with bowel movements
- Constipation, diarrhoea, nausea or blood in your urine
- Difficulty getting pregnant
- Heavy periods
- Bloating – known as ‘Endo’ belly
What causes Endo?
As with PCOS, the exact cause is unknown but theories do exist. The main one being ‘retrograde menstruation’ whereby the blood flows up the fallopian tubes and embeds itself in the pelvis rather than leaving the body as a period.
Treatment & Diagnosis
Getting a diagnosis can be a lengthy process (7.5 years on average) because the symptoms are similar to other common conditions. It’s classified into one of four stages of severity (I being minimal, IV being severe).
Tests to check for physical signs of Endo include a pelvic exam, ultrasound or MRI.
Tests to check for physical signs of Endo include a pelvic exam, ultrasound or MRI. In some cases, your doctor may refer you for a laparoscopy – an operation in which a camera is inserted into the pelvis via a small incision near the navel. If they see signs of endometriosis they can diagnose the condition and take a biopsy of the tissue for further testing. This is the most definitive way of diagnosing Endo. The surgeon can also perform excision surgery to treat Endo as part of the same diagnosis procedure which can relieve pelvic pain.
Currently, there’s no cure for endometriosis. However, symptom-based treatment can be given to help ease the severity of the pain, slow the growth of the endometriosis tissue and improve the quality of life for the person living with the condition.
When discussing treatment options with your GP, there are several things to consider. Your age, severity of your symptoms, whether you’re planning to start a family and how you feel about surgery.
Treatment usually includes pain relief (for mild cases), hormone medicines and contraceptives or surgery. Your doctor may recommend hormone therapy in combination with pain relief if you’re not trying to conceive.
Hormone-based treatment can include the combined contraceptive pill, patches and vaginal rings to help control the hormones responsible for the growth of endometrial tissue each month.
Hormone-based treatment can include the combined contraceptive pill, patches and vaginal rings to help control the hormones responsible for the growth of endometrial tissue each month. The contraceptive implant, contraceptive injection and Intrauterine Device (IUD) can also inhibit ovulation and the growth of the tissue, which may relieve some of the symptoms.
For those trying to conceive, your doctor may prescribe a gonadotropin-releasing hormone (GnRH) to stop the body from making the hormones responsible for ovulation, lower oestrogen and prevent menstruation. This artificial menopause causes the endometrial tissue to shrink. When you stop taking the medicine, your menstrual cycle returns but you have a better chance of conceiving. Both PCOS and Endo desperately need more awareness and funding so that those affected can get the appropriate help, support and treatment.
It’s not in your head, painful, debilitating periods are not normal, your health condition is real and chronic pain deserves validation.
We caught up with Michelle Dinnes who suffers from Endometriosis to understand more about her journey to diagnoses and what her life looks like now…
What first made you aware that you might have endometriosis?
The pain was extreme, I remember phoning my mum on way to the hospital in tears saying I would rather throw myself in front of a car than deal with this pain. Michelle Dinnes
It was the first day of my period in April 2015, I always got lower back pain in the first day or so and just took a few paracetamol to settle it down, I didn’t have any on me while at work and the pain started to become stronger and stronger to a point where I had to leave work and go to the walk-in centre at the hospital. The pain was extreme, I remember phoning my mum on way to the hospital in tears saying I would rather throw myself in front of a car than deal with this pain. I would class that pain as an 8-9 out of 10, for 90 minutes I sat in the hospital wanting to scream because the lower back and stomach pain was so intense it felt like someone had hold of my insides and my spine and was twisting.
Endometriosis has got one of the worst diagnosis records – how long did it take to get a diagnosis?
I have had an awful and not uncommon experience to get diagnosed, after my hospital appointment for my first symptoms I thought okay maybe it was a bad period but when it happened again the month after so I called my GP for an appointment. My appointment went well and I was referred to gynaecology, I went on to have an internal and external scan which showed clear (very normal for endometriosis), I had blood tests done that came back clear. I can’t remember when this was but I have a feeling it was April 2016 I was offered a procedure called a laparoscopy, this is a minor procedure that is done under anaesthetic to have a camera inserted to detect if there is any endometriosis, as I never had an operation I was apprehensive so asked if I could think about it, this was okay and had 6 weeks to decide.
A year later a friend told me about her endometriosis, so many of her symptoms were similar to mine so I decided to start the whole process againMichelle Dinnes
2 weeks later I made the call to agree to the procedure only to be told I was not on the hospital system, I was so upset and just gave up. A year later a friend told me about her endometriosis, so many of her symptoms were similar to mine so I decided to start the whole process again, this time with a very unhelpful gynaecologist. I had the scans etc only to be told there was nothing wrong and the gynaecologist didn’t believe my symptoms and didn’t want to help any further, I argued my way into having further tests however they all came back clear.
In October 2018 I had a scan of my bladder due to what I believed were constant UTI’s (turns out now that it was just due to my endo) there they found a small 5cm cyst on my right ovary. December 2018 I had another gynaecology appointment, this is where my gynaecologist told me there is nothing wrong with me and period pains are normal, painful sex is normal and cramps between period are normal (I am just going to add NONE of this is NORMAL) after telling her over and over that I suspect I have endometriosis she was refusing to put me forward for the procedure, this argument turned into a full-on screaming match which I then won, I was put in for the procedure and on 11th June 2019, I was officially diagnosed with endometriosis and adenomyosis.
Tell us a bit about the post-diagnosis process – did you have a positive experience with your GP / gynaecologist?
Since being diagnosed though things haven’t been much better, I have had every symptom possible now occur, I had to eventually seek and pay for private help as 14 months after my diagnosis I had not been seen and I was becoming worse. I found a lovely male gynaecologist who told me exactly what I was entitled to and my options. October 2020 comes and I see my NHS gynaecologist who told me she would not put me forward to have the endometriosis removed (this is only temporary as endo grows back) and she would only help further after a year of trying for children, wrote me a prescription for folic acid, discharged me and sent me on my way.
I am now booked in for an MRI scan to see where the endo has spread and when possible I will have the operation to have the current endo removed to try to conceiveMichelle Dinnes
Now endometriosis is well known for causing infertility and me and my partner are not yet ready for children so that was a big slap in the face, from then I contacted my GP and told them I wanted an appointment with the gynaecologist I saw privately as he does NHS appointments, took 3 wrong attempts but eventually I got an appointment with that gynaecologist, after seeing him I am now booked in for an MRI scan to see where the endo has spread and when possible I will have the operation to have the current endo removed to try to conceive once my partner and I are married.
Endo belly is just one painful reality of living with endometriosis, how do you manage your symptoms? (Treatment, lifestyle) managing symptoms can be a difficult one especially since some days I can take a few painkillers and rest and then there are days where I am in bed with 2 hot water bottles taking the strongest painkillers I have as often as is allowed to try and keep the pain at bay. The best thing is just listening to my body, I need to rest, I need my hot water bottles and my painkillers.
What is a typical day in the life of someone living with this condition?
I could go deep into this but based on my own experiences every day is different, I am very fortunate that some days I can go about my day and get on with things as if nothing is wrong, more often than not though that isn’t the case. Most days I am going about my day with my stomach cramping up, I am tired from the fatigue and the brain fog is awful. Most my days are spent being uncomfortable, in some sort of pain and being tired however somewhere along the way its become my normal and I just get on with it, keeping in mind these are the better days. The bad days are where I am in bed or on the sofa in so much pain I don’t know what to do with myself and using hot water bottles and pain killers.
What’s the biggest misconception about Endo?
There are a few but the most common one would be that a hysterectomy is a cure, there is no cure for endometriosis. Some people are lucky and have experienced less or no symptoms after having one then there are the ones who aren’t so lucky and still have all the symptoms. Endometriosis can occur anywhere in the body and no just the uterus therefore removing the uterus does not cure it.
Another misconception is that having a baby will cure itMichelle Dinnes
Another misconception is that having a baby will cure it, some people have found that their symptoms have become easier after having a baby and then there’s some who have not been as fortunate, I have actually had 2 people at work tell me their friends cured there’s by having a baby, I’ve even had a gynaecologist tell me this which honestly shocked me that they are giving such hugely false information.
How has Endo affected your mental health as well as your physical health?
I have had depression and anxiety since a young age but feel the endometriosis has contributed to this, sometimes I will sink into my depression when things with my endometriosis are bad, I find it affects my anxiety more so though as when I try explaining things to people I start wondering if they think I’m lying or exaggerating or especially when I’ve had to call in sick for work that they don’t believe I am as bad as I say.
What’s the hardest thing about having an invisible, often misunderstood condition?
The hardest thing is the doubt it puts in your mind, you have to talk to people about it, you have to explain it to your managers at work and I could look fine but be in extreme pain and there’s me saying I need to go home from work. There’s trying to explain to medical professionals what you’re going through and not knowing exactly what words to use or what exactly to say to get through to them how it is. The worst thing is people having the misconceptions so just shrug it off like oh well it’ll be fine once you’ve had children, or the yeah I get really painful periods too. No one can really understand conditions until they have it or they can see it.
What do you think needs to be done to drive awareness, education and change?
Conditions such as mine should be taught in sex education at school because I did not know anything about any conditions until I started realising what I had, we should not go through life thinking that painful periods, heavy periods etc are normal.
What does having Endo mean to you?
It means spending a lot of my time getting the right medical care, most of my journey has been me telling doctors and gynaecologists what I need and then has been a fight to get it. Endometriosis is spending most of your life in pain and just having to learn to live with it. I hope I’ve answered that questions correctly, that was kind of a hard one.
What’s your go-to self-care ritual?
Personally, I have found regular exercise has helped me as well as eating healthier and cutting out meat and dairy. Having a chronic illness isn’t just about having days where you relax and do nothing is about listening to your body and trying new things until you find something that helps you.
Something you’d like all Endo warriors to know…
Endo warriors/sisters you are not alone, we are all in this together and we are all here for each other. Some days we feel like we want to give up or can’t keep going but we have got through it this far and that shows how extremely strong we are, we can keep going we have got this!