March is endometriosis awareness month and this is symbolised by the yellow ribbon. Part of my own personal goals is to make everyone more aware of endometriosis, however I realise that I have never actually explained what endometriosis is! So this post is all about endometriosis: the symptoms, management and the reason it is so difficult to diagnose.
What is Endometriosis?
Most of this information came from an amazing support group for women suffering this disease: www.endometriosis-uk.org
Endometriosis is a common disease where tissue that behaves like the lining of the uterus (endometrium) is found in other parts of the body, usually in the pelvis. It can be found on the ovaries, in the fallopian tubes, vagina, rectum, outside of the uterus (womb), pouch of douglas and in or around the bowel, intestines & bladder. It can also grow in existing scars from pervious surgery causing adhesions. It is a life long condition, mainly affecting women of child baring age. It is estimated to affect between 2-10% of the population, which means around 1.5 million women suffer from the debilitating disease in the UK. Is is thought that the prevalence on endometriosis of women with infertility issues is between 30-50%. It is also the 2nd most common gynaecological problem in the UK, costing the UK economy £8.2 Billion a year. Endometriosis is not an infection, it is not contagious and there is no proven cause of endometriosis. There is also no long-term treatment. It devastates lives of women and their families.
The cells that appear outside the uterus respond to hormonal changes during a womens cycle. During a normal cycle the endometrium builds up in the uterus as a result of hormones, ready to receive a fertilised egg. If a pregnancy does not occur the lining breaks down and leaves the body as a period. In endometriosis, the cells (like the ones in the uterus) grow in the abdomen and behave in the same way. The cells respond to hormonal changes and bleed. However the blood cannot leave the body (as a period), which causes inflammation, severe pain and the formation of scar tissue (adhesions). Sometimes the cells gather inside the ovary and form a chocolate cyst called an endometrioma (which is what I have). Endometriosis is classified at minimal, mild, moderate or severe.
What are the symptoms?
Endometriosis causes severe issues for women that affect day-to-day life. These include the following:
- Chronic pain especially during periods, but this can be at any time during their cycle
- Irregular periods
- Heavy periods (with or without clots)
- Spotting between periods
- Chronic fatigue/ lack of energy
- Depression/isolation/low mood
- Bowel issues (bloating, pain and/or bleeding when passing bowel movement, irritable bowel)
- Bladder issues (pain when urintating, blood in urine)
- Pain during or after intercourse
It is very difficult to diagnose endometriosis. Most women will have some of the above symptoms but many women have no symptoms at all. The severity of the disease does not always correlate with the amount of symptoms/pain. In some women a small amount of endometriosis can be more painful than severe cases of the disease, as it affects everyone differently. A laparoscopy is the only way endometriosis can be truly diagnosed. It cannot be diagnosed with examinations, scans or blood tests and it can not be seen on a scan, unless an emdometrioma is present. A laparoscopy is a very routine surgery but it is not done until symptoms are chronic, women have been suffering for years, there is suspected infertility or if women pay privately. Research suggests that there is an average of 7.5 years between women seeing their GP with symptoms and getting a diagnosis confirmed. Most women will have suffered in silence at home for many months/years prior to seeing their GP, which means the total time from first symptom to diagnosis is likely to be much longer than 7.5 years.
Fortunately in my case I have not suffered from chronic pain, but I have had excessive fatigue for years, always blaming my shift pattern. Sometimes I feel as though I can’t get out of bed even when I have slept for 10 hours! When I get a day off I regularly spend the day on the sofa napping as I feel exhausted. It has always been a joke between my family and friends that I can’t make it through a night out as I go to bed so early! I am not quite sure how I manage to make it through night shifts at work. Chris always gets angry with me because as soon as I sit on the sofa I’m asleep. I cannot tell you how many selfies similar to the ones below, he has on his phone!!!! I am the worst person to watch a movie with 🙁
I also suffer with my bladder & bowels, constantly needed to wee and having irritable bowels. Passing a stool is often extremely painful and causes bleeding (sorry, if you haven’t realised by now…..I’m very open and I love details!!!). I constantly feel bloated, which affects my life and my confidence on a daily basis. The main symptom for me was my infertility, but since my diagnosis I have been researching and I now realize I have had many symptoms over the last few years. My case of endometriosis is severe and must have been developing over many years, which proves that you do not need to have excessive pain for the disease to be on the severe side. Until my diagnosis, it had never crossed my mind that I suffered with the disease as I have always had very light, relatively pain-free periods. I naturally assumed that women with endometriosis would have very heavy and painful periods all the time, but now I know this is not the case. This just proves that it must be very difficult for GPs to diagnose and refer, as the symptoms vary so much from woman to woman.
When I last saw my surgeon he showed me some of the photographs that were taken in my first surgery. I expected to see red, sticky patches of blood on my organs. However I was surprised to see that the endometriosis was a white, string-like substance, not red/bloody. There were many patches on my uterus that looked like cigarette burns, which my surgeon informed me was the endometriosis. It was actually very difficult for my un-trained eye to see the disease! I had always assumed it would be red in colour and I couldn’t have been more wrong! He also showed me the picture of my left fallopian tube, which was extremely swollen and MUCH bigger than it should have been due to inflammation. Of course I found the whole thing fascinating as I love the human body! Part of being a midwife is to be at ease with human bodies, bodily fluids, organs and flesh. In fact my family regularly tell me to stop going into too much detail when discussing activities at work!
Anyway back to endometriosis….
What is the treatment?
There is no actual treatment that will make endometriosis go away and never come back. There are a few options that will temporarily reduce endometriosis and the symptoms, but on a short term basis only. These include:
- Surgery (laparoscopy) – aims to remove/destroy the deposits of endometriosis by cutting it away (excision) or destroying it using heat or a laser. It also aims to divide adhesions to free the tissues/organs, which will help with fertility. A Laparoscopy is when a telescope is inserted into your abdomen through holes in your tummy, to look at the tissue/organs. This is done under a general anaesthetic and you often go home the same day.
- Hormone therapy – blocking/reducing the production of oestrogen, which means cells cannot continue to grow and will help relieve symptoms. This is either the contraceptive pill or more invasive hormone treatment such as Zoladex (inducing medical menopause).
- Pain management with analgesia (pain killers) – help to relieve severe pain.
- Complimentary therapies – acupuncture, reflexology, homeopathy, Chinese medicine.
- Hormone therapy followed by surgery – suppressing oestrogen to make surgery more successful, which means the endometrial tissue can be removed and organs un-stuck.
- More invasive surgery: laparotomy (incision above bikini line), hysterectomy (remove of womb), Oopherectomy (remove ovaries).
There is no cure for endometriosis, but treatment is available to help women who have severe symptoms. These are the women whose daily lives are affected, many of whom suffer with anxiety, isolation or depression as they find going out and living a normal life difficult. The main problem with endometriosis is that all the while women are having cycles (producing oestrogen), the cells will re-grow. So surgery and hormone therapy is not a long term treatment. Many women are required to have further surgery as their symptoms return after a few years. Some people who have been in contact with me, have had to have surgery 2 or 3 times to try and improve their symptoms. Hysterectomy is a last resort, but doesn’t usually fix the problem. Ovarian cysts (endometriomas) generally recur after drainage and therefore need to be completely removed by draining, removing the tissue and the lining of the cyst within the ovary.
So…..you have probably read this and now feeling depressed that you will have to suffer forever. Although you can never be cured, help is available. If you have any of the symptoms discussed above please contact your GP. You do not need to suffer in silence or be alone. There are so many support groups out there, people to talk to and to share your story with. We have to support each other. Endometriosis has a significant impact on the quality of life for the woman suffering but also on her partner, friends and family. Living with someone suffering this horrendous condition must be difficult for partners, as they likely feel helpless and not able to help. It is important to support each other and communicate effectively so you both know how the other person is feeling. Women suffering from endometriosis may have feelings of guilt, low mood and irritability, where as the partners may feel frustrated and worried. These feeling are heightened when there are fertility issues as a direct result of endometriosis and can cause a lot of tension.
For myself and Chris it has been very difficult, as we have had to get our heads around the diagnosis of endometriosis and infertility at the same time. I feel like I am the issue, which initially made me feel embarrassed and upset. I have tried very hard to be open and honest with Chris about how I feel at all times and he has been a great support for me, as have my family and close friends. I am not sure what I would have done without a good support network around me. I am also very grateful that I am under the care of an amazing consultant who is doing everything he can to help me become a mum and treat the disaster going on in my pelvis!!! The good news is that being pregnant suppresses the menstrual cycle, which alleviates the symptoms of endometriosis, as no new cells form while there is no oestrogen in the body. However the symptoms will usually return after cycles commence in the post-natal period.
Information about endometriosis:
- Support group for endometriosis
- Endometriosis fact sheet
- NHS Information for endometriosis
- NICE guideline for endometriosis
- RCOG information for patients about endometriosis
I hope you have found this helpful. If you think you may be suffering from endometriosis, then I hope this prompts you to get help. There are many options to explore before surgery…..do not suffer in silence. Do not let endometriosis affect your life anymore.
Your endometriosis does not define you, your strength and courage does
Just because you can’t see it, doesn’t mean it doesn’t exist: Living with an invisible illness
Sometimes I have to rest, sometimes I have to say no, sometimes I have to cancel plans. I have to take care of myself, don’t hold it against me
Why is she a strong girl? Because she walks around every day on the verge of tears, and you don’t even have the slightest clue that she’s not ok
Sometimes you just have to curl up with your blankie until you feel better 🙂
Sincerely, Shelly x