What is Endometriosis & how can it lead to ostomy surgery?

What is Endometriosis & how can it lead to ostomy surgery?

March is Endometriosis Awareness Month & in this blog post, Rach tells us more about the condition & also chats to two women who have it.

Endometriosis (pronounced en- doh – mee – tree – oh – sis) is the name given to the condition where cells similar to the ones in the lining of the womb (uterus) are found elsewhere in the body.

In the UK, around 1.5 million women and those assigned female at birth are currently living with the condition, regardless of race or ethnicity. Endometriosis can affect you from puberty to menopause, although the impact may be felt for life. It happens when small pieces of tissue that usually grow inside your uterus grow outside of it instead. The tissue can block your fallopian tubes and can cover your ovaries and the tissue lining of your pelvis. It causes intense pain, and gets worse over time.

The pain felt from having endometriosis is not restricted to the reproductive system but can affect the digestive system and elsewhere in the body also. As a result, mental health can be seriously affected which makes opening up this conversation even more important. Connecting with others in a similar position whether it be in your everyday life or online has helped women find a support network of those that can truly relate to them.

Endometriosis can affect the bowel in the abdomen and pelvis. Penetration of the endometriosis can vary within two forms: Superficial – endometriosis is found on the surface of the bowel. Deep – endometriosis penetrates the bowel wall. If it is present in the bowel and the growths are deep, a surgeon will remove the lesions and close any holes in the bowel. In severe cases, a surgeon may remove a portion of the intestine that has endometrial-like tissue before reattaching the remaining sections of the bowels. The medical term for this is segmental resection. If the amount removed is too much to surgically reattach, stoma surgery may be necessary.

 For those that have not heard of an ostomy before, this can be incredibly daunting. Having stoma surgery for any reason is life changing, but as a by-product of another condition could be very difficult to accept and navigate. There are some wonderful advocates that live life with endometriosis and a stoma on social media. If you are anxious and want to find out more, reach out and you might be surprised by the connections you make and more importantly, be able to relate to others in similar situations. Having stoma surgery when it is not an emergency will involve meeting a stoma nurse and chatting extensively about how this will change your life. It may be a temporary adjustment which can be reversed or permanent. Any questions big or small that you have regarding this, write down and bring to your appointments. No question is a silly one, and you need to protect your mental health by having any worries explained. 

Image credit: National Today

The last month of awareness has seen many brave women share their own experiences. It can be a difficult long road before diagnosis with women suffering in silence for many years putting it down to period related symptoms alone, not only by themselves but by health care practitioners as well. Many have shared that they feel their concerns and worries were not taken seriously by their health care practitioners. It can have a negative effect on all areas of your life including relationships, employment, family planning and sexual activity to name but a few. The chronic pain felt can be debilitating, with social media platforms a useful tool to find sufferers bravely sharing their story with hints and tips on how they keep on top of their symptoms and get on with their daily lives the best they can.  

We spoke to two such brave women who with the use of their Instagram accounts share their own experiences with endometriosis. Firstly we have Natasha (Instagram account @natasha_monk1) who uses her platform to share and support others through her own journey of endometriosis and Crohn's disease. The body acceptance queen shared her diagnosis with us and her top tips for pain relief:

I was diagnosed with endometriosis in October 2020 after I underwent surgery for my Crohn's disease due to stoma issues. During this surgery, they noted that I had an endometriosis ovarian cyst that was 4 cm in size. A laparoscopy was performed, and the cyst was drained.

Having endometriosis can be physically and mentally draining because I get fatigued which really affects my mood, and my lower back hurts really badly. I can not stand for too long. The first three days of my period are the worst. The pelvis pain is so intense, which means that if I have any plans, I normally have to cancel. I've had occasions where my periods were so heavy I've leaked over my clothes at work and had to borrow a work colleague's scarf to wrap around me so I could go home. I also get heart palpitations followed by difficulty breathing. This can make me feel anxious, unable to do everyday tasks, as I have to sit down as these issues also cause dizziness.

I wish that medical staff had told me that I had endometriosis after requesting my medical report. I noticed it was mentioned in 2017, but no one followed this up with me or thought about referring me to gynaecology. If I had known sooner, I would have spoken to my doctor and would have delayed my IVF treatment until my endometriosis was investigated fully.

If you have endometriosis, the one tip I would give is to do as much research as possible so you can advocate for yourself. You could even speak with others who have been diagnosed. If you're not satisfied with what you have been told, get a second opinion. You know your body better than anyone.

I take Solpadeine Max, but don't do what I used to do and wait until the pain is really intense. Otherwise, I will be screaming and crying the house down until they kick in. I also use a tens machine. This is really good for my lower back pain, then a hot water bottle on my stomach and a hot bath to try and relax my stomach muscles.

Next up we have Dionne (Instagram account @endowarrior_x) who, together with sharing her story to help others, has gained a place at university to study to be a nurse where she will truly be giving back to the community having first hand experience of living with the chronic condition. She shares with us that after 6 years of pain she was diagnosed with endometriosis. The main symptoms were painful periods, heavy bleeding, nausea and vomiting, bowel issues and tiredness. Before Dee had surgery in September, endometriosis was very debilitating and she would find herself bed bound and taking a lot of medication to manage. Since surgery she still gets some symptoms but not as bad with her approach to try to take things one day at a time. Dee said, ‘I would say to keep pushing until someone listens and it’s ok to get a second opinion. Your pain is real. To ease the worst symptoms I would take painkillers and I find heat helps so I’d use a hot water bottle or have a bath’. 

Women's experiences are totally unique as you can see from these two lovely ladies. Some may suffer with different symptoms more than others but remember to see your doctor if you have any concerns or changes which may stray from your typical self. Thank you to Natasha and Dee for sharing with us their truth and if you would like to ask them any questions please give them a follow! 


Until next time, Rach x



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