Endometriosis is a condition that affects one in 10 women in the UK [1], yet not many people know what it is, let alone know how to learn to live with it. Endometriosis [2] is a condition in which pieces of tissue like the ones that lines the womb (endometrium) are found outside of the womb. The tissue is commonly found on the ovaries and fallopian tubes, abdomen, bowel, and bladder but can also be found in other parts of the body. It embeds itself on organs and can cause adhesions. The symptoms are varied but common ones include severe pelvic pain, fatigue, heavy and painful periods, and sometimes infertility.
A number of years ago, I had a phone call from the hospital calling me in for surgery to remove what could possibly be endometriosis. After many years of doctors' appointments and misdiagnoses, I was relieved action was being taken, but kept thinking "should I be panicking at this point?" I've had a history of multiple medical "setbacks" (as I like to call them) so I was pretty laid back about it all. I was sent home after surgery with an endometriosis leaflet and told I'd be fully recovered from the surgery and disease in three to seven days (spoiler: there is no full recovery or cure for endo and I didn't know this). Three weeks later, I was still bed bound and completely unprepared for the diagnosis or recovery. I was in my final year at university, writing a dissertation, about to turn 21, and unable to walk more than five minutes. Nevertheless, due to my stubborn nature, I powered through ignoring any post-surgery symptoms, subsequently making them worse. I was ill and frustrated, and eventually I took to the internet to find out how I could help myself [3].
Endometriosis has no definite cure and has a wide range of symptoms with an average diagnosis of seven-and-a-half years. [4]It is a debilitating condition, but many suffer in silence due to unresolved symptoms or misdiagnosis. Many women feel powerless, labelled hypochondriacs in their journey to diagnosis. Despite the increasing recognition and awareness for the disease, there is little to actually help women live through their symptoms happily. Painkillers and rest may help, but life goes on and many of us have to work through our symptoms regardless of our current health status. Sharing can help immensely with empowering women physically and mentally to live a fulfilled life with the condition.
I asked nine women who suffer from endometriosis to share their tried-and-tested tips and hacks on how to live happily and as free of pain as possible. Even if you don't suffer from endometriosis, these tips could help ease period pain or simply help you understand the condition a bit more.
Remember, It Is Your Body, Your Choice
Become your own health advocate: "Take time to research your condition to find out what treatments are available to help you heal medically, physically, and holistically."
Diary: "When seeing your GP or consultant take a pain and symptom diary with you and don't leave until you are comfortable with the options you have been given."
- Katie, London [5]
Join a Support Group
Exercise for a better YOU: "When it comes to working out I've often resorted to extreme of overdoing things by working out every day or doing nothing at all. It took me along time to realise that neither approach has worked well to enable me to be the healthiest version of myself"
Communicate: "I've spent much of my time pre- and post-endometriosis diagnosis feeling really scared and frustrated that many of the people in my life just don't seem to get what I've been going through . . . In my experience, a problem shared is often a problem halved. Joining a support group has been the single best and biggest thing that I have done to support myself on this journey with endometriosis. Joining a support group [6] can help you find others that share experiences and can offer support and advice.
- Claire, Hertfordshire [7]
Heal Through Yoga
Yoga stretches: "Sometimes the pain is there and it's too late to do the preventative stuff, so it's about managing the discomfort at that moment. I find gentle yoga stretches are so helpful for this. The feeling of the stretches distracts me from the physical pain and gives my brain something else to focus on." Find these exercises over on Jessica's website. [8]
Endo Diet: "I generally follow the endometriosis diet and personally, caffeine and sugar are pretty much guaranteed to give me some level of pain. I love coffee, so this is a real work in progress".
Keep on top of tiredness: "I have disturbed sleep and when it was at its worst, I was seriously depressed . . . my body just can't cope with the chronic condition, the fatigue that comes with that and being extra tired on top. I now try to get to bed by 10 p.m. . . . I still feel tired everyday, but it's manageable"
- Jessica, London [9]
Good GP = Good Referral = Good Care
Don't doubt the hot water bottle: "My heat pad or hot water bottle is a godsend. The heat helps any muscular cramps and contractions" Aimee uses heat pads that strap on with Velcro but wears them the wrong way round to get the heat on the pain source lasting hours.
Take it easy and be OK with that: "I have to remind myself it is is OK to do the minimal during a flare. It's hard not to feel guilt but if I've had to take strong pain relief and still struggling with the pain, sometimes there's nothing else for it than climbing back into bed or having a duvet day."
GP: "Try to get a GP that understands endometriosis or at the very least gynaecology-related problems and can help with referrals, sick notes, prescriptions, and even accommodate with emergency appointments if symptoms are severe."
- Aimee, Nottinghamshire [10]
Quit Being So Hard On Yourself
Heat, heat, heat: "If all else fails, get a hot water bottle and give it a good old hug. Get Netflix on, and sit with the hot water bottle over your pelvis with microwavable wheat bags for neck and shoulder pain." Don't forget that go-to period pain favourite, the hot water bottle, sometimes it can be the best pain reliever.
It's not your fault: "If you catch your inner voice telling you, you 'should' be able to do things you can't, stop, take a breath and think to yourself 'what would I say to a friend?' It's likely a friend would tell you are incredibly strong and to give yourself a break."
- Laura, London [11]
Try Everything Once
Get online: "Having a chronic illness can be super isolating and quite often you'll feel like the only person facing all these issues, but getting online and speaking to other women, helping them and getting the same in return has been the best support system I could have ever wished for."
Pace yourself: "Take a few minutes out of whatever you are doing to have a little rest. You aren't a superwoman and you can't do everything at once and that's perfectly okay." This is a tip everyone needs to remember once in a while.
Try everything once: "We all have our doubts from time to time over the treatment options we are offered by our healthcare providers. Remember, just because it didn't work for one person doesn't mean it won't work for you!"
Rethink that coffee and wine: "Try to cut back on caffeine and alcohol as much as possible. A boring one I'm afraid, but alcohol always made my endo angry!"
- Shireen, Leicestershire [12].
Acceptance
Build a support network: "An important part of the journey is allowing yourself to get both help and support from others. This has been vital to me. Acceptance is not about giving up but recognising that you may need to do things differently than you have done in the past."
It's not an excuse: "One thing I was worried about with going public with my disease was people's perception of me changing. As mentioned previously, I don't want to appear weak or incapable of doing things. I don't want people to think I am using my disease as an excuse for not meeting up, or pulling out of a gym session, or not getting into work for the day."
Vitamins and supplements: "One of the symptoms I have struggled to adjust to the most is the dizziness. I now take Bioglan Women's Multi-Vitamins on a daily basis; they have given me a huge sense of relief."
- Amy, Essex [13].
Bring Help
Heat pads: "I won't go anywhere without carrying heat pads on me. The best I have found if you are active/at work are the ones that strap right round your stomach and back. They last for a good eight to 10 hours. I keep them in my draw at work, and even knowing they are there for the bad days is a comfort!"
Appointments: "I have found it much easier if I write notes/chat with a family member about any up and coming appointments. I take the notes in and refer to them if necessary. Most of our symptoms are complex and it's good to be able to explain them in detail. I also bring someone in with me if I can so they can remember/write notes during the appointment. And don't be afraid to ask the consultant questions!"
- Beth, Cardiff [14].
Read Up
Don't wait: "I was diagnosed right before my wedding and was distracted and in denial that I was sick, so waited too long to get help."
Experienced Doctors: "The hardest thing was finding a good doctor. Few doctors are really experience in Endometriosis. Don't give up and continue to advocate for yourself until you find a good doctor. Dr. Seckin, an Endometriosis specialist in NYC wrote a book [15] about treatment and advice."
Therapy: "I am continuing to have pelvic floor disfunction after surgery. Pelvic physical therapy and massage therpy is really helping me recover."
- Catie, New York. [16]