Managing Endometriosis: The Options Post-Diagnosis
Approximately 1.5 million people in the UK 1 in 10 women and those assigned female at birth) are currently living with endometriosis, regardless of race or ethnicity. , Yet despite its prevalence, much about the condition still remains a mystery.
If you live with endometriosis, you probably know that one of the biggest symptoms is pain… a lot of it. Experiencing such chronic pain amongst other symptoms can not only have physical consequences, but can also impact emotional well being.
I was told repeatedly that “I just had a bad period”, “I had a low pain threshold” and “it was just something I would have to endure as a woman”. – Abbie (@cheerfullylive)
With limited research and understanding about the condition, it is difficult for both doctors and endo warriors to get a handle on managing endometriosis symptoms.
Sadly, there is currently no cure for endometriosis, however, there are different treatments available to manage the severity of symptoms and improve your quality of life. Here, we’ve put together our top tips for managing endometriosis symptoms, and how to relieve the pain.
Medication for endo management
There might not be a cure for endometriosis, but some pain relief can go a long way. Whilst it can be frustrating to just get told to ‘take a pill’, sometimes the only way to get you through those intense cramps is by taking some painkillers. Your doctor may also recommend taking nonsteroidal anti-inflammatory drugs (NSAIDs) or paracetamol to first manage any endometriosis pain.
Depending on the severity of your endometriosis pain, you may try a course of painkillers for a few months until you assess whether or not they are working adequately. But if you’re finding that these aren’t quite making the cut, and you’re cancelling your weekend plans with your pals thanks to a flare-up, don’t suffer in silence! This is just the first option for managing endometriosis, so push your doctor for alternatives.
Pain pain, go away!
Then there are the days where popping pills doesn’t quite cut it and your endo pain has you bed-bound. What do you do? Endometriosis UK suggests some extra tips for pain management:
- Heat and comfort → Hot water bottles or heated wheat bags partnered with your comfies will help get you feeling more comfortable – time to ditch the jeans and get those trackies on!
- Physiotherapy → Physiotherapists can develop a programme of exercise and relaxation techniques designed to help strengthen pelvic floor muscles, reduce pain, and manage stress and anxiety.
- Transcutaneous Electrical Nerve Stimulator (TENS) machines → a small machine with electrodes that send electrical pulses into the body, hopefully blocking the pain messages as they travel through your nerves.
- Pain clinics → GP’s can refer you to your nearest pain clinic to see chronic pain specialists. Push for your doctor to get you the expert advice you deserve to manage your endometriosis.
Hormone treatment to manage endometriosis
When you are diagnosed with endometriosis, hormone treatment is a common avenue your GP or specialist will lead you down, in addition to those all-important painkillers.
The lining of your womb consists of cells that respond to your sex hormones, particularly oestrogen and progesterone, that rise and fall throughout your cycle causing the lining to thicken, break down and bleed. For those who have endometriosis, similar cells also exist outside of the womb (usually in the abdomen) which also bleed during your period. This bleeding causes inflammation, scarring and could also cause your organs to bind together, leading to chronic pain.
The aim of hormone treatment is to maintain low levels of oestrogen in the body, as oestrogen has been found to encourage the growth of endometrial tissue. Hormone therapy can help reduce heavy flow or even stop periods and therefore improve symptoms. Whilst most endo warriors find that hormonal treatment reduces their symptoms, it is not a permanent fix to manage endometriosis.
Different types of hormonal treatment used to manage endometriosis include:
- The combined pill (oestrogen and progesterone)
- The mini-pill (progesterone only)
- An intrauterine system (IUS): a small T shaped plastic device fitted into the womb and lasts for 3 to 5 years depending on the brand used. A very commonly used one is the Mirena coil.
- Progesterone injections: It needs to be taken every 8 – 13 weeks depending on the brand used. Depo-Provera, Sayana Press and Noristerat are commonly used in the UK.
- The progesterone implant : It is a small rod placed in your arm and lasts for 3 years.
Unfortunately, not everyone gets on with hormonal contraception and there is a slight chance you could experience some side effects. So it’s important to consider which hormone treatment is right for you.
Surgery – eek!
A last-resort if the above treatments aren’t keeping your symptoms at bay.
Initial surgery will almost always involve gynaecological laparoscopy for both diagnosis and excision. In laparoscopic surgery, also known as keyhole surgery, your surgeon inserts a small tube with a light source and a camera, through a small incision near your belly button. They use this to be able to look inside your tummy or pelvis and then use fine tools to remove endometrial tissue (excision) or use intense heat to destroy the tissues (ablation). They can also remove any scar tissue that has built up in the area.
This form of surgery can be difficult, as many of the lesions are below the surface and not visible, so a highly skilled practitioner is required to remove them. For some endometriosis sufferers, their lesions could have spread to the rectum and other pelvic regions, requiring surgical attention from a team of experts.
The procedure is carried out under general anaesthetic, so you’ll be asleep and will not feel any pain as it’s carried out. After your surgery is complete, your doctor may also recommend taking hormone medication to help improve pain.
It might be the most long-lasting treatment, and people do notice relief in symptoms, but many who undergo surgery find their endometriosis grows back over time. This is why it is common for our endo warriors to have to undergo surgeries multiple times.
Sometimes healthcare professionals will also suggest undergoing a hysterectomy, a surgery where the womb is removed. This can be a very big decision as post surgery, you will no longer be able to become pregnant or carry a pregnancy. If you’re looking to have children, you can discuss egg freezing prior to this procedure with your doctor,. This means that you will then have the option of trying to have a baby using fertility treatments such as in vitro fertilisation (IVF) with the help of a surrogate. However, in some cases, it is possible that someone might still experience symptoms after getting this surgery done.
If the ovaries are also removed during a hysterectomy (oophorectomy), this stops the release of hormones. Whilst this can help with symptoms, it will put you into menopause and you might need hormone replacement therapy (HRT) afterwards to manage menopausal symptoms.
Like all types of surgery, surgery for endometriosis carries a risk of complications such as infections, bleeding, bruising, etc. You can read more about it here.
How do I decide which treatment is right for me?
Deciding which treatment might work best for you is always a decision you must take with your doctor after discussing the pros and cons of each option. There are several factors that are important to consider when deciding which treatment is right for you, including:
- Your age;
- The symptoms you experience and their severity;
- If you are looking to become pregnant in the future – some treatments e.g. hormonal contraception offered to manage period pain will not be recommended for someone who is looking to conceive;
- Whether you have tried any of treatments before and how you have responded to it.
Is your endo pain too much? Feel like you’re getting nowhere with your doctors? At Hertility, we don’t believe in ignoring or masking your symptoms. Our team of experts include endometriosis specialists that can help you decide which treatment suits you best whether it’s surgery, hormone treatment or pain relief.
Resources:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2700667/
https://www.nice.org.uk/guidance/ng73/chapter/Recommendations#pharmacological-pain-management
