Talking Endo & IC With Niamh from Those Endo Sisters

By Niamh Richards

Niamh is the other half of @thoseendosisters, and her sister Freya has previously shared her story on the QENDO Blog. Niamh’s journey started at the age of fourteen, and at 23 she was diagnosed with both pelvic and diaphragmatic endometriosis and interstitial cystitis, after years of heavy bleeding, severe pelvic pain, and fatigue that led to a period of her not being able to walk to work or around the shops without feeling exhausted. In this blog Niamh shares her story and her current management of both conditions to reach out to anyone else who may be experiencing the same, and reassure them that endometriosis doesn’t have to be the end of your life as you know it.

Endometriosis effects 1 in 10 and there is currently no cure but this does not mean it is the end of your life - you just have to learn to have a new one.

Hi, my name is Niamh and I am 23 years old and I was diagnosed with Stage 2 endometriosis in July 2020, aged 22. My endometriosis was found on my ovary, uterus, pelvis near the nerves on my legs, pouch of Douglas and in my general reproductive area, it was also found on my diaphragm but could not be removed as the other side was my heart. I have also been diagnosed with interstitial cystitis and am now coming to the end of my 10 bladder instillations. Here is my story:

I first started my period at the age of 14 and remember screaming in the bathroom (how dramatic haha)! I didn’t know that it was not normal to be in pain and to bleed as heavily as I was. As the years went on I would bleed through my period pads onto the chairs in school, onto people’s sofas and through my clothes, I found it so embarrassing!

When I was 16 I started to take the contraceptive pill, Cerelle, it took me three attempts to settle with this pill but I just bled continually. All my friends in college used to comment on how often I was bleeding! I always seemed to be on my period! This happened for years on and off and I just thought nothing of it.

When I reached 18 I started to experience pain in certain positions during sex, I would bleed after sex and my period pains were getting worse and so was my skin! I developed eczema all round my eyes, behind my ear and little rings of it on my face.

At the age of 19 I was still on Cerelle, still bleeding and had been suffering with major anxiety so I was prescribed antidepressants. I started taking these and I cannot describe in any other way apart from this: I was bleeding as if it was Niagara Falls down there. I was heavily bleeding after sex, I was bleeding CONSTANTLY. During my day at work I asked my colleagues if somebody had spilt something on my chair or wondered if my hot water bottle had leaked as there was a big patch of damp on my desk chair - I then put my hand to my behind and it was covered in blood. I had bled through my pad and work clothes and had to take my lunch break early after washing my trousers in the sink to buy some new knickers and some new work trousers. I went back to the doctors and told them I didn’t want to be on the antidepressants anymore and told them about my bleeding. I was prescribed tranexamic acid to help stop the bleeding. I decided not to take these tablets as one of the side effects is bleeding ?? Like what the hell ?? After I stopped the antidepressants the bleeding started to settle.

I reached my 20’s and sex was becoming more painful, I was still bleeding after sex, my skin was constantly spotty and each time I walked to work I would still bleed through my pad through my work trousers and have to wash them in the sink, along with having terrible period cramps where I would often have to go home from work. I had tried using tampons but my body just wasn’t comfortable with them. I had turned 21 and decided that enough was enough I would have to get this investigated so I rang the doctors and I was booked to have an internal examination. I was so frightened. I cried my eyes out at the appointment and wouldn’t let the doctor take a look, so she booked me in for another appointment and my boyfriend came along with and held my hand and I still couldn’t do it. I then didn’t rebook and just carried on as I was.

In October 2019 I had just turned 22 and had been on an amazing holiday, I had thoroughly enjoyed myself drinking, eating, having sex with my partner and doing whatever I wanted and I was so happy as there wasn’t much blood and I wasn’t in pain. We returned home and one Saturday morning late in November, and at 5am I woke up to what I imagine contractions are like. I got a hot water bottle some paracetamol and I was crying my eyes out, this just wasn’t cutting it. I rang 111 (which is the UK non emergency out of hours NHS line) and spoke to somebody on there and described my symptoms. I was referred for a drs appointment and went along, they didn’t examine me just touched my stomach and made sure I made an appointment with my GP for the following Monday. I was prescribed cocodomal for the pain and just took the weekend to rest.

I visited my GP on the Monday and something changed in me, I just thought “you are going to have to let this lady do an internal examination, it won’t take long and I need to know what is going on”!! My doctor was lovely she let me take a minute with some water was very supportive and diagnosed me with Pelvic Inflammatory Disease (PID). I was prescribed some really strong antibiotics and pain relief. Finally I thought after taking these I would feel better! I was on these tablets for 14 days, and the whole time it was hideous. They are so strong that I took the first week off work because I was exhausted from the medicine and the pain and it was proving a challenge to walk up the stairs! I was just excited to complete the course of medicine and hopefully be back to my normal self. This was not the case. I had a continual flare up for 9 months and it was the most challenging (mentally and physically) time of my life. I had developed acne on my face, I couldn’t walk to work anymore I had to rely on taxis, I couldn’t walk round the shop - people would stop and ask if I needed help and I couldn’t walk up the stairs on some days either. Some days my pain was excruciating and other days it was bearable. I eventually ended up on naproxen, cyclizine and 30/500 cocodomal to help with the pain as I began feeling overwhelming nauseous and couldn’t eat properly, I lost about a stone and half. The cocodomal was making me painfully constipated and if I wasn’t constipated I had painful diarrhoea. I was back and forth ringing the doctors and going for ultrasounds to be told I had fluid near my uterus but they weren’t sure what it was. The waiting times became longer and eventually I was on the waiting list for a laparoscopy this was with the NHS. Then... Covid happened. I received a phone call advising me I had been told the wrong waiting time and that I should add 6 months on to that and that I would be looking at waiting around 9 more months to a year until my surgery. I just cried and cried and thought “I can’t do this, surely this isn’t what I am supposed to feel like for the rest of my life?”. I thought to myself, I can’t just sit here and do nothing.

I was very fortunate that in May 2020 my benefits window opened and I opted into my private medical insurance. I rang to make sure I was enrolled and started the private process from there. I had a telephone consultation with Dr Griffiths and it was amazing, he said to me “Niamh what do you think you have?” and I responded with “Endometriosis” and he went “Yes I think so too, we will book you in for a laparoscopy and a cystoscopy as the bladder and endometriosis are closely linked”. I cried on the phone as nobody had actually said that to me before! I had spent this whole time wondering what an earth was going on in my body, and spent many nights wondering if I could have children. I was booked in for excision surgery on 22 July 2020 and it was as easy as that!


My Recovery

You are advised to recover for 2 weeks. This is how long it takes for you to feel normal after the op! But it took me a few months to start getting my energy levels back up if I am honest! My quality of life is SO MUCH BETTER. It was incredible, I am able to change my bed sheets and walk round a shop without being in pain! There are still days where I do have pain and I do flare up but it is nothing like before. I now have the Mirena coil and am on Gederal. My follow up was 2 weeks post op and I had butterfly stitches which meant I had them taken out a week after my operation, I wasn’t allowed to bath for another 2 weeks on top of that. Make sure you drink lots of peppermint tea and have heat for the gas pain, it tends to go after 4-5 days. Keep walking around and just listen to your body if it has had enough. Make sure you have some form of laxative or lactulose so it can help you go to the toilet! You may also find you become more sensitive to products, so over time I have become more sensitive to skin care, deodorant and have developed more eczema on my scalp!

At my follow up, I was told where my endometriosis was in my body, that it had been excised, and that I also had interstitial cystitis. My surgeon also told me that I never actually had Pelvic Inflammatory Disease and that my antidepressants should never had made me bleed at all! I was also advised that because they left the endo on my diaphragm, that if I experienced any more pain then I would have to consider taking Prostap. Prostap is a strong injection that is used to stop all ovulation and to basically put your body into an early menopause (the Australian equivalent is Zoladex). Prostap is also used for prostate cancer patients and to preserve fertility (IVF). I also learnt that endometriosis is hereditary as my mum has it, so when my sister started experiencing pains I thought to myself “I think she has endometriosis too” and she was later diagnosed a few weeks after me!

My symptoms of endometriosis

- Pelvic and lower back pain
- Bloating
- Severe cramping
- Eczema (this is an inflammatory response)
- Acne
- Aching ovary
- Pain in legs
- Fatigue
- Nausea (this was really bad)
- Pain during sex
- Heavy bleeding
- Pain in lower tummy
- Pain when going to the toilet (either constipation or diarrhoea)

My symptoms of endometriosis on my diaphragm

Now this one was a complete shocker when I got diagnosed but when I looked into it and realised what I had been experiencing, it all made sense! My body was in severe pain for a long time so it was hard to pin point where it was all coming from. For a while I had been getting breathless in the gym and I was going around 3-4 times a week, working out and then going for a swim and it wasn’t your normal out of breath for a work out it made me feel like... shit, so I have asthma? Am I really this unfit? As time went on I got my desk chair at work checked as I started experiencing all these painful sensations in my the tips of my shoulders and I was completely confused by it! I put it down to being my chair, but it was altered and the pain still would go.

My symptoms of diaphragmatic endometriosis

- Breathlessness
- Pain in chest
- Upper abdomen pain
- Shoulder tip pain

Interstitial Cystitis

As my bladder was so inflamed from interstitial cystitis, I was advised that I need to undergo treatment called bladder instillations. These have also changed my life! Bladder instillations are used to help refresh the lining of the bladder to hopefully ease the pain. The whole process takes around 5 minutes and you can feel unwell for 48 hours but it is a fabulous thing to happen if you have IC nonetheless! You undress from the bottom half, you then lay on the hospital bed with your legs in the frog position and a big paper towel is placed over you. The area around the urethra is cleaned, then a catheter is inserted into your urethra and any excess urine is drained to help prevent any form of infection or UTI occurring. Then a syringe is hooked on to the catheter and the fluid for the bladder lining is inserted (mine is uracyst but there are lots), after this you are not allowed to drink or go to the toilet for 1 hour!

My symptoms

- Upper Abdomen Pain
- Burning sensation in my legs
- Burning sensation in vagina after sex
- Aching urethra
- Bloating
- Pelvic and lower back pain
- Nausea
- Urinary frequency and urgency
- Pressure in the stomach

Tips and tricks to help!

There are things you can do to help your IC, however it is also a journey and also can be a painful one if you are working out your trigger foods. There is an IC diet that I was advised to follow which basically ruled out anything acidic to my bladder this can include, tea, coffee, chocolate, certain fruits, certain sauces, fizzy drinks, processed food. The list goes on! You basically will just have a simplistic diet which you can experiment with and drink lots of water and herbal teas, and there are lots of alternatives! For tea I drink red bush (rooibos) and for coffee I drink whole earth chicory non caffeine blend, still not the same as your regular coffee but helps the craving! I was advised to basically act as if I was allergic to all of these things. It is hard to get used to when you have been so used to eating what you want and also challenging during the holidays! You can also use supplements to help, I take marshmallow root, slippery elm, prelief (which when eating something acidic takes out 95% of the acid from the food) and Azo (this helps with frequency and burning sensation). Also buying a cooling pad to place in your knickers is another good one! These are all things that have worked for me, but this won’t necessarily be the same for everyone, but might be a good jumping off point for you to start the conversation.

Life after diagnosis

My life has changed for the better, from being ill and in pain for 9 straight months, it was so difficult, but it also taught me lots of lessons! I learned so much about myself, how much I could handle, what I wanted from my relationships and found out who my true friends were. I am lucky enough to have a really supportive family. I have changed my diet to include some gluten free products, I drink almond milk and try and follow the IC diet as best as I can. It is overwhelming at times and can be frustrating having to change your lifestyle but you are just basically being reborn (that’s how I look at it), and having to learn everything again and starting from a new slate, which is not always a bad thing! You can still enjoy life and have fun, you may just have to pace it out!! Now I have had the majority of my endometriosis excised and I receive treatment for my bladder, I can now differentiate what pain is associated with which illness.

I am fortunate enough to go through this with my sister - although I would not wish this upon anyone! We have tried to help others by posting our tips and tricks from our experiences on to our Instagram page which we both run called @thoseendosisters! We have had it up and running since August and it is such a wonderful community to join and we are always around to chat to anyone who needs to vent, ask questions and just general chit chat!

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