My unamicable companion - Endometriosis
In this blog we explore what circa 2 million women in the UK suffer from – ENDOMETRIOSIS. Our suspicion is that if we asked around, we would all know of atleast one female friend, who suffers from it.
These women are true warriors – carrying on with life as usual, while suffering excruciating pain on an almost daily basis.
Endometriosis is a condition where tissue similar to the lining of the womb starts to grow in other places, such as the ovaries and fallopian tubes. During the average woman’s period she experiences pain due to inflammation of the tissue in the lining of the womb.
For an endometriosis sufferer,inflammation may occur not just in the womb but also in all other organs where this tissue may have spread to, thus multiplying the level of pain. But the pain is often not limited to just their periods and endometriosis sufferers often suffer consistent pain outside their normal period cycle.
This condition presents with several complications however, what remains startling is the period of time that an average endometriosis sufferer struggles with their condition before being diagnosed. We have learned it can be anywhere between 7 – 12 years sometimes even 19 years.
We have presented two important perspectives, one from an endo-warrior looking to help women understand more about this condition daily, Hannah Rendell, who has graciously and bravely agreed to document her journey for us.
And the second from Shree Datta, an accomplished and experiencedConsultant Gynaecologist and Obstetrician practicing at some of the most distinguished hospitals in London.
I first started experiencing gynaecological pains from the age of about 13. From the day I started my period, the pains were unbelievable. I was given many different medications to try but unfortunately they were not successful so I was put on birth control at the age of 14. I would throw up, faint, wasn’t able to go to school on some occasions and I was always told, this was just “normal period cramps” that every women experienced. I was at a loss, I felt alone, and I felt nobody believed anything I said.
9 years on since my first trip to the GP, at the age of 22, I was finally booked in to see a Gynaecologist. I had ultra sound scans and internal scans and nothing was truly visible to confirm Endometriosis. The isolation and impact this had throughout my whole life was and still is debilitating. I put up a good fight and I never gave up pushing to see a gynaecologist. I ended up seeing three different Gynaecologists before I was referred for my Laparoscopy.
I had a laparoscopy in February 2019 where the surgeon found Endometriosis on my rectum, uterosacral ligaments and bowel. Since diagnosis I haven’t seen a huge difference in relation to pain, especially during menstruation. I take various amounts of pain relief and other medication to control blood flow and pain. The diagnosis was a bitter sweet moment for me. Being told I had Endometriosis after such a long time made me feel vindicated, I knew this was something I had been dealing with for such a great length of time.
I always knew people suffered with period pain. However, I never realised that mine were not normal. On speaking to my friends, I realised their pain wasn’t half as much as mine on the spectrum. It also made me realise that extremely painful periods were not normal and something needed to be done.
That there was a stigma attached to periods, made it doubly difficult to talk about it. We need to teach all young people that we can talk about periods without feeling ashamed, so they don’t have to endure unnecessary suffering.
About 30%-50% of people with endometriosis are also rendered infertile. I am not a medical professional so I cannot comment on what is and what isn’t true, however what I know is not true is that getting pregnant is a “cure”. During my surgery, a dye test was performed through my fallopian tubes and unfortunately we learned that my fallopian tubes were blocked.
The options presented to me were to undergo more surgery to unblock them or consider fertility treatment.
On more than one occasion I have been advised to just “get pregnant”, this I find particularly hurtful to hear. People are likely unaware of the damage they inflict on me when they say such things.
I know from experience that I struggle in certain social situations when this matter is brought up.
I haven’t actually been given any advice by my GP or a medical professional on how to alleviate pain or manage my endometriosissince my surgery, apart from being given countless amount of pills to try. However, after speaking with a few fellow sufferers, I use meditation to help me relax and take time to myself. This really helped me throughout my recovery, I can’t actually recommend it enough!
To alleviate my sense of loneliness, I also started an Instagram account during my surgery which was a great support for my mental health. Post Op, I felt ever so alone, had nobody to speak with and was bed bound for almost 2 weeks.
Thanks to the Instagram community, I have since met so many amazing people, learnt so much more about the condition and this for me has been the best coping mechanism, mentally as well as physically. I challenge myself every single day to try and teach someone about Endometriosis by bringing it up in conversations with friends and my work colleagues.
I have learned that there are so many myths around cures for endometriosis. Simple fact, there is no cure for this condition. We just have to live with it and learn to live our lives as best we can whilst struggling daily with excruciating pain.
Some of the most hurtful and painful things I have been told were that the pain was “all in my head”, “get pregnant it will cure you”, “have you considered a hysterectomy”. All of the above were not an option for me and just made me fight even harder to be believed.
I have since gradually started to cut out dairy and gluten from my diet which has helped with the Endometriosis Bloat (Endo Belly). I eat lots of fruit and vegetables to ensure I have a balanced diet as well as keeping fit. I really enjoy walking which helps me take my mind away from pain. I know this isn’t the same for everyone, you just have to find what helps you.
I am extremely lucky to have the most supportive husband. He has been there for me through every step of the way, from GP appointments, Gynaecology appointments and surgery. My husband has seen me in some terrible ways and I know it is tough for him to see and makes him feel hopeless sometimes.
However he has always believed my pain, my symptoms and has never given up on me. I am also extremely lucky to have such a supporting family who never give up and push me to fight harder. I hate for the people I love to see me in such bad ways which just encourages me more to find new things to try to alleviate pain, help with my mental health and to better myself in general.
I just want to add, please don’t ever feel alone. I hope one day we will all have the answers we so well and truly deserve. The struggle is not fun! The mental impact it has on our health is just as debilitating. We will get the cure one day, we just need to keep fighting, keep strong and keep making our voices heard!
Dr. Shree Datta says:
Endometriosis is a condition where tissue which is usually found in the lining of the womb develops in other places, such as the ovaries and fallopian tubes. It’s one of the most common conditions I see in my clinic.
It’s usually seen in women in their twenties and thirties and is a long-term condition that can significantly impact your day-to-day activities. The reason for endometriosis developing is not known, but it may be down to a combination of things – for example, backward flow of blood into the fallopian tube rather than leaving the body as a period, a problem with the immune system or genetics.
The symptoms can vary:
- from being mild to severe and include painful periods or pain during intercourse,
- weeing or emptying your bowels – particularly around the time of your period.
- Often, woman say they feel bloated and sick during their period with a change in bowel habit.
- In some cases, periods may be heavy and fertility can be affected.
I usually tell women to note down their symptoms and periods in an app or in their diary and to make an appointment to see their GP if the symptoms don’t improve over the course of a few menstrual cycles, which translates into 3-4 months.
You can often manage symptoms using simple pain relief, such as Ibuprofen but where this is not the case, you may be referred to see a Gynaecologist, and I will see you initially in clinic to assess what to do next.
When this is the case, after an examination, I may request an ultrasound to identify where the endometriosis is and suggest treatment based on this and your symptoms. This can include medication, such as the contraceptive pill or Mirena coil to help manage your symptoms or an operation such as a laparoscopy. This is key hole surgery which I perform to diagnose and treat endometriosis and is usually done as a day case operation.
We always discuss what the best treatment for you is and this depends on your symptoms – for example, if you are trying to get pregnant, the contraceptive pill or Mirena coil is not suitable, and removing the endometriosis through an operation may be a better option.
Endometriosis can improve with age and in the vast majority of women who go onto have children, I’ve seen their symptoms improve or in some cases disappear.
Where this isn’t the case, we can offer further medication or more extensive surgery but again, that’s something we discuss with individuals where it’s needed.
Dr Shree Datta may be reached on: firstname.lastname@example.org for consultations.
Our heartfelt thanks to Hannah and Shree for sharing their thoughts and experiences.
An important take away for us from this blog is that, if you are an endo sufferer, it’s crucial that you are heard and that your health practitioner is not dismissive of your pain or your symptoms. If you feel you are not being heard then consider changing your practitioner to someone who will take the time to listen to your concerns and diagnose you properly. It’s also important to have a supportive network of family and friends with whom you can openly share your experience without being judged.
In the months ahead, we will explore ways in which our endo warrior friends may be supported and we will aim to bring to you similar stories.
Until our next blog, best wishes from the team at LUXStore.
LUXStore, are purveyors of organic period pads, whose core mantra is to enlighten and so empower women to make the best choices about their health.