‘It’s just a bad period!’ ‘Just deal with it, every woman goes through it!’ ‘It’s all in your head!’
If you suffer with bad period pains and have sought medical advice, then you’re highly likely to have heard some of the comments above.
Well lovely people, I am here to tell you that they are wrong!! Bad period pains are NOT normal, we don’t have to just deal with it, and it is certainly not in your head!!
I started my periods when I was 11 and they were hell from day 1. I visited the GP so many times and was always told the same thing….it’s normal and to just get on with it. I was put on the pill when I was 14, it worked for a while but then the pains would come back so I’d try another one and it was the same cycle of a short break then back to being in pain. I tried numerous pain medications, nothing helped. I developed sciatica, heavy and painful legs, extreme fatigue, non-cyclical pelvic pain, diarrhoea, constipation, shoulder pain….I was always told the same thing….there’s nothing wrong with you.
Finally, when I was 32 I was referred to a gynaecologist and put on the list for a laparoscopy (keyhole surgery to see what the hell was going on!). When I woke up from surgery I was told I had Endometriosis….I couldn’t believe it, I finally had a diagnosis…it wasn’t just in my head!!
So, what is Endometriosis?
Endometriosis is a chronic condition where tissue that is similar to the lining of the uterus (womb) grows elsewhere around the body. It’s classed as a gynaecological condition but it is actually a full body disease, many believe that for this reason it should be under it’s own speciality.
Endometriosis is most commonly found in the pelvic cavity, especially around the ovaries & fallopian tubes, but it is also found on the bowel, bladder, ureters, lungs, diaphragm…well basically anywhere!
There are 4 stages of Endometriosis but not all gynae consultants use the stages as the symptoms don’t always correlate to the severity of the disease.
- Stage 1 – Minimal – Few superficial implants.
- Stage 2 – Mild – More, deeper implants.
- Stage 3 – Moderate – Many deep implants, small cysts on one or both ovaries, presence of adhesions.
- Stage 4 – Severe/Deep Infiltrating Endometriosis – Many deep implants, large cysts on one or both ovaries, many dense adhesions.
What are the common symptoms of Endometriosis?
- Painful periods
- Heavy/irregular periods
- Leg pain
- Lower back pain
- Pain during sex
- Difficulty urinating
- Difficulty breathing and/or collapsed lungs around their period – this is when patients have Thoracic Endometriosis (in the lungs and/or Diaphragm)
Getting a diagnosis…
Now this can be the tricky part….as mentioned before it may take a while to even get a referral to a gynaecologist. Most GP’s will try out hormone treatments first and may send you for a scan, the first scan is usually an internal ultrasound. It is very important to note that Endometriosis isn’t always seen on scans, however, if an Endometriosis specialist sonographer scans you then they are more likely to be able to spot the signs of Endo. If a scan is negative (doesn’t show anything) then the NICE (National Institute for Health and Care Excellence) guidelines state that Endometriosis should not be ruled out and further investigations should be completed. You can read the NICE Guidelines here - https://www.nice.org.uk/guidance/ng73/informationforpublic
You should be referred to a gynaecologist who will consider the treatment based on your symptoms. If you have symptoms of deep infiltrating Endometriosis affecting the bowel, bladder or ureters then you should be referred to a BSGE (British Society for Gynaecological Endoscopy) Endometriosis Specialist Centre. You can read more about the BSGE and its centres here - https://www.bsge.org.uk/
It’s shocking to know that on average it takes 8 years to get diagnosed with Endometriosis. Sadly people are often misdiagnosed with other conditions first, I was diagnosed with Irritable Bowel Syndrome a few years before my first laparoscopy, when they discovered that my bowel was twisted and stuck to my uterus. I had so many tests, scans and physio for my sciatica and was told by an orthopaedic surgeon that it was in my head. Then, low and behold, during my first surgery they found endometriosis on my sciatic nerve.
What are the treatment options?
There are a few treatment options – surgery, hormonal treatment, or pain management. It’s not a one size fits all so you may have to try a few things to see what works best for you. It’s important to know that there is no cure for Endometriosis. People are often told that a hysterectomy will cure Endometriosis or having a baby will cure Endometriosis, but this is simply not true. Surgery can help with a lot of symptoms, but Endometriosis can always grow back.
- Surgery – This is often referred to as the gold standard treatment for Endometriosis. The surgery performed is called a Laparoscopy (keyhole surgery). Endometriosis lesions are removed (known as excision surgery) or they can be burnt away with a laser (known as ablation).
- Hormone treatment – Endometriosis feeds on Oestrogen so a progesterone based hormone treatment is most commonly used. Some people are given gNRH analogues – these are in injection form and put the body into a chemical menopause. Another common hormone treatment is the pill or a Mirena Coil (a progesterone based coil rather than the usual copper coil). You can read more about hormone treatments via this document created by NICE - https://www.nice.org.uk/guidance/ng73/resources/patient-decision-aid-hormone-treatment-for-endometriosis-symptoms-what-are-my-options-pdf-4595573197
- Pain Medication – such as paracetamol, NSAIDs (anti-inflammatory medication such as Ibuprofen), neuropathic pain medication (such as Amitryptaline) and in some cases Opiods (such as Codeine or Tramadol).
Endometriosis Research -
There has simply not been enough research into Endometriosis to know what causes it, there have been many theories, but nothing has been definitively proven. My hope is that with the awareness that is currently being raised that future generations won’t have to suffer like we have.
Dr Barbara Guinn from Hull University is currently doing research into biomarkers that could indicate Endometriosis. It is hopeful that if successful this will reduce the diagnosis time significantly as patients would have to do a simple urine test which would indicate that Endometriosis may be present.
How to manage Endometriosis?
Living with Endometriosis is hard, it is listed in the top 20 most painful conditions according to NHS. Even with that though, we’re not taken seriously. Endometriosis can have a significant impact on the general wellbeing of patients, the emotional aspect of living with a chronic condition is hard so it’s important to prioritise you and your mental health.
My top tips…
Tell your nearest and dearest about the condition so that they can better understand what you are going through – it’s not so easy for people to understand the symptoms when they can’t see them.
Self-Care – this is sooooooo soooooo important. When people suffer with chronic pain it can often lead to secondary pain…mainly due to the tension and stress on your body. So, the more that you can relax, the better….I know it’s not easy when you’re in pain though. Self-care looks different to everybody, while some people love yoga and meditation it’s not for everyone. Think about what you love doing…what helps to keep you calm and your mind occupied? For me personally I always feel more relaxed when I light some candles, use a calming essential oil, snuggle up on the sofa with my dog, heat pad, my weighted blanket and watch episodes of something funny on TV. For some people they like to have a nice bath, listen to music or spend time doing their favourite hobby.
Look after your emotional wellbeing, some people with chronic illnesses can go through phases of grief. Don’t be afraid to reach out to your GP for support and a referral to talking therapy or a local long-term conditions program.
Think about your environment and how you can make it work for you. I’ve got a cosy corner in my living room with everything I need to hand. I’ve got a weighted blanket, electric heat pad, pain medication, snacks, puzzle books, books, TV remotes, drink, aromatherapy oils, tissues, pens…basically everything I might need if I’m in pain and need to rest.
Join a support group, I found a great one on Facebook and if you type in #endometriosis in Instagram it will come up with loads of accounts created by people with the condition…most people will be happy to support you.
You can also come and say hi to me… www.endobuddies.com or via Instagram