When You Shouldn’t Suffer in Silence With Period Pains
Many women come to dread the four to seven days a month when their period arrives, already anticipating the cramps, bloating and lethargy that comes with it. But when are period pains not just period pains? It’s a question the 1 in 10 women affected by endometriosis struggle to get an answer to – sometimes suffering with excruciating and debilitating cycle-related pain for up to seven and a half years before a diagnosis.
Of course, it doesn’t help that many women are not aware of what a ‘normal’ period is supposed to be like. Despite advances in talking about mental health, we still have a long way to go when it comes to gynaecological issues. The menstrual cycle is still somewhat taboo, with a lack of honest conversation leading many of us to assume our own symptoms are normal – when they are anything but.
What is endometriosis and what are the symptoms?
This week is Endometriosis Week in the UK, which aims to raise awareness about the often undiagnosed condition which affects around 1.5 million women in the UK. Endometriosis is debilitating and devastating – leaving some sufferers in excruciating pain and sometimes leading to depression, difficulty keeping a job and even infertility. The condition causes chronic pain, because tissues similar to those in the lining of the uterus have migrated elsewhere in the body – most commonly to the abdominal area. When sufferers shed their uterine lining each month as their period, these tissues also begin to shed, bleed and rupture. However, there is no way for this blood to leave the body. This can cause inflammation, pain and the formation of scar tissue.
Lena Dunham spoke out in 2018 about her own experience battling endometriosis for a decade, which saw her undergo eight failed surgeries, cancel tours and lose days of her life to hospitalisation, before finally making the decision to have a hysterectomy at age 31. We spoke to two endometriosis sufferers about their own journey to diagnosis.
“When I turned 25 years old, I was woken in the middle of the night with intense pain. Despite a previous diagnosis for polycystic ovary syndrome, I knew what it was like getting my period and this was not it. I went to the doctors and they said it could just be a one-time deal depending on diet, stress and other factors so I just took their comments and agreed. From then on, it became worse and worse. Each month came around and I was bent over in pain, unable to move or go anywhere. Tests showed that I had a fibroid the size of a small almond which explained the recent heavy bleeding.
“It just became a waiting game from here on out with doctors, specialists and clinic visits but no one really believed me when I tried to articulate the pain I was in. I had one male doctor actually say to me: ‘It sounds like you can’t handle the period pain…’ Needless to say, I walked out of the appointment.
“I was then at my last clinic appointment and decided I wouldn’t leave until I was put on at least a few doctor’s lists for a laparoscopy and hysteroscopy (fibroid removal). The woman I saw was wonderful, but as my wait to be operated on began, my bleeding got worse. I wasn’t able to make it to work on my daily commute. I had to go to the Boots on the way one day to buy a box of tampons as I had bled through my trousers, which were, thankfully, black. I was then put on a list six months later for an operation in two months.
“The doctors and surgeons couldn’t have been nicer to me. They kept me calm, held my hand and assured me that I was going to be okay. The fibroid was removed and it showed of course, that I had endometriosis, which they were able to remove as well. I’d had to wait two years for the operation, during which time the fibroid had grown an inch… I also opted to have the Mirena coil put in when I was under anaesthetic as I felt I had no other option and thankfully for me, it saved my life! I have had it for about three years now and won’t go back until I have to!
“My advice for women would be to not give up if you know your body feels different. Only you know your body and I knew mine wasn’t right. When it affects your day-to-day life, you know you’re in trouble.”
“I started my period when I was 16 which is fairly late. All the girls at school where starting and I was the flat-chested girl still wishing for mine to make an appearance. Little did I know what I actually had in store. I went straight on birth control when mine came, and, each month, my period was fairly painful and heavy but I thought this was totally normal.
“As the years went on, it got worse. The longest I bled for was nine months at a time, and my doctor just told me to double up and even triple up on my birth control, taking packs back to back. My mum demanded I went for scans where I went and nothing showed (endometriosis doesn’t show up on scans).
“With no diagnosis, the pain got worse and worse. It felt like barbed wire was wrapped around my entire pelvis, womb and ovaries, dragging down and all around. I tried everything and was put on Tramadol for the pain. Sex was a nightmare: it was very, very painful and as I was pretty much always bleeding it was basically non-existent anyway. Boyfriends didn’t understand what I was going through as no one had any answers for me. Several relationships ended because of it.
“As the pain meds increased, I was put on antidepressants to combat the mental health issues the pain was causing me. It left me completely miserable and I was barely even able to work because of the pain.
“I finally got referred to a gynaecologist and they agreed to do a laparoscopy to see why I was in such crippling pain the majority of the month. It showed that I had endometriosis. I have never been so happy to finally have an explanation for all the pain and depression I had suffered. However, they also told me that conceiving children would be problematic and it took me some time to grieve.
“Recovery was long. Over the next three weeks, I was a mess. I lost another boyfriend due to the disease and depression during this time. I was sad I may never have children, I was sad there wasn’t a cure and I was sad I was losing friends and partners!
“However, six weeks post-surgery, the pain returned. The endometriosis made my stomach so swollen I looked six-months pregnant (people even asked when it was due - hard to hear when you could be infertile) I went back on the morphine, was permanently signed off work and close to giving up! There were times where I just wanted to die.
“My doctor at my next appointment told me about a drug called Prostap, which I could take while I waited for my next operation. Prostap is used to treat prostate cancer in men and induce women into a temporary menopause. I was 27 and going to have my first taster of the menopause. I was terrified. There was still a week of the month where I would be in pain, but it was better. Then I started suffering awful hot flushes and lost a lot of my hair. I had to come off the drug a month earlier than planned as it left me with suicidal thoughts.
“My second operation date finally arrived; I was so excited to have the disease burned and cut away. I did a urine test and the doctor said she would do a pregnancy test just in case. Then, the miracle happened. We were waiting for the results and she looked at me in utter shock. The test had shown a faint positive. Somehow, I was pregnant! My very own miracle.
“I was terrified throughout the pregnancy, as women with endometriosis have a higher risk of miscarriage and pre-term labour. Pregnancy was incredibly painful and I was constantly worried but I somehow made it to 39 weeks and delivered my beautiful miracle, Cassius. My depression had disappeared as soon as I found out I was pregnant so meeting my son was the happiest day of my life! He was perfect.
“My periods returned irregularly at three months. I still suffer horrific pain three weeks of the month but Cassius has given me a reason to get up in the morning. I also had the coil fitted to help with the pain, alongside more morphine.
“My son is now 16 months old, my periods are still irregular but they are very heavy. My last gynaecologist mentioned the potential that I have adenomyosis, which is endometriosis deep inside the womb. Again, there is no cure but a hysterectomy can help. I have my son and if having a hysterectomy could improve me being a mother then I would do anything for him, but it won’t necessarily cure me for good. I’m left waiting for what the future holds.
Will I always be in this much pain? Will I have any more children? Will I have to have a hysterectomy before my 30th birthday?”
What both of these stories show is how uniquely endometriosis presents to and affects its sufferers. While the chronic pain in both cases is the same, the journey to diagnosis and subsequent pain management is different – showing the complexity of the condition. Similarly, the debilitating affects which spread into all areas of sufferers’ lives – from jobs to relationships – can rob women of their twenties: years when society expects us to be thriving, forging a career, finding relationships. Starting a family.
If you recognise any of the symptoms in this article, visit Endometriosis UK and book an appointment with your GP.