My Endometriosis journey
A photo of be before my operation to help me diagnose endometriosis
March is a month of many important issues. “National Women’s Month” and Endometriosis awareness month.
So I felt it was fitting to share my story of endometriosis and my battle to finally be diagnosed. This journey has been nearly 15 years in the making. On average It takes 7.5 years to get a diagnosis but the fact it took me double the time shows how much this is affecting others. See link here from “Royal college of nursing” discussing this more - https://www.rcn.org.uk/-/media/royal-college-of-nursing/documents/publications/2015/march/pub-004777.pdf
There are a lot of organisations like Endometriosis.org- https://www.endometriosis-uk.org/ and wellbeing women - https://www.wellbeingofwomen.org.uk/ who are looking into ways to support women with this condition but I honestly feel unless you know how to get support or what to do it’s an incredible lonely journey.
My story and how it started
I started getting heavy and painful periods when I was 23 years old. I started my period at age 11 and although it hurt a little bit it only started to change dramatically. On a holiday in India when I was 24 I became really unwell. I was sick and vomiting a lot and had extreme stomach pains this was after my period had finished and I ended up in hospital. My uncle was a doctor so I was able to access treatment straight away. They did several tests and found I had a cyst on a ovary. This cyst was apparently the size of cricket ball. I was told to get it investigated as soon as I got back to the UK.
I was told I needed to have a ultrasound after of a year of them observing me. The cyst disappeared a year later. When I was 26 and my periods were still very heavy and painful. My GP told me I was likely to be suffering from painful periods also known as Dysmenorrhea. It was so bad when I was travelling to my work in Angel one day I almost felt like I was going to faint on the train. My period was so painful and I felt extremely sick. I had episodes like this regularly into my late 20s and felt really tired and had very bad headaches.
I was referred to a gynaecologist and when I saw her she didn’t even examine me. What she said is that painful and heavy periods words were very common and she prescribed me some mediation to slow down the bleeding. This helped with the heavy bleeding but not with the pain. I dreaded my periods and found it difficult when I would go to work. All I wanted to do when I had a period was rest and recover and not go anywhere.
After I got married in 2013. I started to notice the periods get worse. In fact on two occasions on two separate trips. In Belgium I had to stay in my hotel room because I wasn’t well enough for 2 days of our trip. In Birmingham on a day trip my pad had leaked through my trousers. I felt so embarrassed. I was also in a lot of pain. This all happened in between 2017-18. So we decided to see a doctor. I saw an amazing GP who suggested I have a vaginal ultrasound. This GP was the first person to suggest it could be endometriosis When it came time to have this examination it hurt so much they had to stop. I had an abdominal scan instead and continued to live with this pain for a few more years.
The struggle of dealing with undiagnosed endometriosis
A photo of me returning from a GP appointment in June 2022
When I started to get more symptoms of undiagnosed endometriosis this included IBS, painful periods and also feeling tired or having extreme fatigue. Some of the symptoms were particularly embarrassing my stomach bloated just before ovulation and during my cycle
In 2018 and I ended up in hospital with a bad stomach infection. Again at the time I stayed in hospital for a few days but had no scans and nothing was asked about my gynaecological health because it was my stomach and seen as gastrointestinal issue. Yet I had one of the symptoms of endometriosis which was rectal bleeding.
In 2020 my periods got worse this pain affected my overall quality of life. Including not being able to work or go out. I also gained a lot of weight. My face was very puffy at times and people would comment on this. Often people would say I have gained weight. This really affected my confidence and self-worth. I would wear baggy clothing. Especially trousers that were wide. I couldn’t wear certain trousers because of the pressure it put on my stomach area.
In 2022 we decided to go back to my GP and I encountered a lot of ups and downs. I was still hesitant to do this as felt so let down by the doctors I had seen already. However a young GP I spoke to followed up after I complained of heavy periods. A nurse had attempted to do a smear test a few weeks before this but it hurt so much I couldn’t have this done. Symptoms like pain in or around your vagina can also sometimes be linked to endometriosis. When the doctor tired to do the smear again in an appointment I started crying it hurt so much. I felt so embarrassed. The GP was really kind and comforted me. I remember feeling let down and upset about my situation as it felt like my struggle with women’s health was only just beginning.
I had a ultrasound within weeks of this appointment and was then was referred to another gynaecologist who told me that from the symptoms it looked like endometriosis but she wouldn’t know till I had a laparoscopy. When I went to this appointment I still didn’t have results from my ultrasound. I remember feeling really frustrated by this as was the doctor who was seeing me.
I later found out the results when I phoned my GP that I had a fibroid on my left ovary and a large cyst on my right ovary. Both me and my husband were determined to not give up finding answers and getting some kind resolution to this. I asked for a private referral as luckily my husband has private medical insurance through his work.
Before we picked a private doctor we looked at local gynaecologist who specialised in endometriosis and PCOS. This was really important to us as a couple because we both had a feeling this is what I had. I just needed confirmation and treatment now.
The private route and what happened next
Once we picked a private doctor that we thought would be a good fit and had researched her experience we booked an appointment. The day the appointment came I was very nervous and anxious. We were already running late for the appointment and I remember asking my husband to turn the car around. I was so angry I felt like this was a sign that maybe I would be let down again my doctors. Part of the journey of dealing with this is when you have been dismissed so much you carry a lot of this with you.
The anxiety I carried with me around appointments was often very common. I feel sad about not being heard or listened to. In some previous cases especially in my 20s, it felt like I was medically gaslit and I was worried this would happen again. When I did meet the doctor for the first time I did find myself getting a bit defensive. Many life and personal commitments including running my own business had made be ignore and be in denial about my endometriosis. Especially because of the pain during attempted smears and embarrassment. Maybe I was overthinking it and perhaps it was completely normal to have these painful and heavy periods. That denial kept me from going private for many years.
Once we established a good connection with my new gynaecologist who was very kind and very supportive. I had tests including a MRI, Ultrasound, Blood tests you name it. After the scans they found a large fibroid on my left ovary and my right ovary had a cyst on it. My doctor told me I could have endometriosis but would not know anything until I had an operation called a Myomectomy. I remember feeling in complete shock and was so scared. They reassured me. I was also told to have an injection to reduce the fibroid called Prostap. The reason for this injection is that it helps you go into temporary menopause and delays periods. Durning this time period after the injection I was bleeding for nearly 2 weeks. I didn’t have a period for a few months before my operation but I did experience menopausal symptoms like hot flashes, nausea etc.
Come to late March 2023. I had one final appointment before my actual operation. I was then told some unexpected news that I didn’t expect at all. My fibroid was not a fibroid at all, it was a large ovarian tumour as it hadn’t shrunk. I remember being very shocked about this and not quite knowing how to take this in. This was literally a few days before my operation. I was also told the week before my husband and family couldn’t be with in the hospital with during the operation because they had an Covid outbreak. I felt really upset by this and not at all prepared for that mentally.
My operation
This was a photo taken a few hours after my operation when I was in a lot of pain
My operation happened on March 29th 2023. A day I will never ever forgot because of what followed after this.
On the day of the operation I was already nervous and told to have a early breakfast as needed to fast after 8am and drink water only. When my husband dropped me to the hospital he wasn’t allowed on the ward due to the Covid restrictions there. I waited quite a few hours and was then taken into the operating theatre. I remember the anaesthesiologist and other doctors talking to me.
I can’t remember anything else expect waking up and seeing my doctor and her telling me they didn’t need to do full open surgery but they did do a laparoscopy. They had removed my left ovary and fallopian tube and my right ovary was still there. I later found out my cyst on my right ovary was twisted round which may of added to the pain. I was relieved to hear it wasn’t open surgery. After 5 mins the pain hit me I remember feeling extreme pain and crying out in agony. The nurse gave me some morphine and that helped a little bit. I then was taken down to my room and although I felt groggy it was hard for me to sit up. My stomach hurt a bit and I felt like my insides hurt a lot.
I was given my first meal and within 10 minutes I vomited it up. Anything I drank or eat I couldn’t keep down for the next few hours. I fell asleep for a bit that evening. I remember when I woke up the ward sister and nurses encouraging me to go to the toilet. This is when I should of realised something was wrong but somehow I didn’t. There was a patient across the hall who kept screaming all night. I hardly slept at all. When I woke up I still didn’t feel great. I continued to vomit everything I eat and felt incredibly weak.
I stayed in hospital for 2 more days and the same pattern continued. I also thought when I attempted to go to the toilet It would be a bit painful as my stomach muscles had gone. I hadn’t slept at all apart from Thursday evening and this was only for a few hours. One of the nurses did give me a sleeping pill one night and helped a bit but I just felt so cranky.
Complications after the operation
I was so ready to go home and figured I may feel better if I did. I asked both nurses if I should still be in so much pain 2 days after my surgery. One of them said it’s normal to have some pain. Believe me the pain I had wasn’t anything I have felt in my life it was incredibly painful. In fact it was more extreme then the horrible painful periods I had for since my 20s. My belly looked like a water ballon and felt heavy. Again I was told that a bit of bloating was to be expected from this type of surgery. I did see a doctor on the ward but he didn’t think anything of it. Asking if I had gone to the bathroom. To him it looked like I was constipated so was given some medicine to help with this.
I was released on Saturday relieved to be heading home as I hadn’t seen my hubby or family in days. I remember before the health assistant helped me get changed I noticed a tiny amount of water on my nightdress. I didn’t think anything of it at the time but this the relevant for later hence me mentioning it.
When my hubby came to pick me him I still felt very unwell I still couldn’t eat and I just wanted my bed. I was also very hungry but the first thing for me was to get some rest. So as soon as I got back I slept for a few hours. My hubby then cooked me something however within 10 minutes I vomited all of this food up. Later then evening I noticed my T-shirt was complete wet. It seemed that water was leaking from somewhere in my body. I was really scared and completely unsure as to what was happening. We phoned the private hospital and they told him this was properly nothing and it’s common to leak.
I couldn’t sleep at night and was in a lot of pain that night. My hubby was attaching pads to my stomach to stop me from leaking and we were up every hour throughout the night. At around 5am I said we needed to phone the hospital and go back as something was really not ok. We phoned my uncle who is a consultant and he advised us to go back straight away. This time my hubby was pretty insistent on the phone and said I was very unwell and needed to see someone straight away.
We arrived at the hospital and my stomach was hurting so much I was also so weak from hardly being able to eat over the last few days. I also hadn’t slept properly over the course of the last few nights so was just so tired. I remember sitting in the waiting room I was wearing a huge pad and having a incontinence pad on the chair this is how much I was leaking now.
I was seen within 30 minutes and ended up seeing the doctor who had discharged me. When he saw how ill I was he looked deeply concerned. They phoned my consultant who came straight away. I was then sent for an immediate MRI. My consultant advised a nurse to put a catheter in me straight away. Within 30 minutes of having the catheter fitted I felt better. It turned out I had a bladder tear after my operation which caused me to have severe water retention which is why I was leaking.
Water retention can be really serious if it’s not handled correctly. In my case I was in pain for 3 days with it. I recovered in hospital but was told I needed to wear a catheter for 14 days to repair the tear. I was advised to then see a urologist because if it didn’t heal I may need further surgery to handle this.
I still had some complications a few weeks after this in April and saw a really knowledgeable urologist. It turns out I had an on-going urine infection after my catheter was taken out. When it came to May I still wasn’t quite feeling ok. My urologist did another MRI and they found a fragment of a stich had ended up tethering to my bladder and it felt like my stomach was being pulled down. I then needed a second operation to resolve this. This operation was a lot less evasive but I was still very nervous about it. I had this operation at the end of June only 3 months prior to my first one. The procedure I had was called a rigid cystoscopy.
Within a few months I started to feel better and I can now say that I am now ok. Yet the mental and emotional trauma is something that I am still healing through.
The aftermath now
Me now in 2024. I am a lot better but it’s an on-going journey with my health and finally getting diagnosed.
This all happened to me a back in March 2023 to June 2023. My health is now much better but during that time I have had to deal with a lot.
Including thinking I was in full blown menopause this was because my period only properly came back this year after 18 months.
Also Coping with the fact that being childfree may be the norm for me and the grief of not being a mum. This is something we has a couple have been dealing with. I have been vocal about this because it’s something that we did want. Yet it may take us years to move on from that part of our journey.
The Trauma of the aftermath of my first operation and not being believed as to how much pain I was in. The main night nurse and another nurse didn’t believe how much pain I was in. I remember that this is something that still haunts me. This is something the ward doctor also missed. I got lucky that we pursued this. Truth be told I shouldn’t have been discharged when I was.
I was eventually diagnosed with endometriosis but it took 15 years to get here. It shouldn’t take a women who is suffering from painful and heavy periods to get here. When women is not being believed it makes you resistant for asking for support even when you need it. I take on board my part of being scared too. Yet I didn’t feel believed and I also felt like maybe I was in denial and this was my way of coping. I wouldn’t recommend that to anyone. Yet I do think more GPs need adequate training to deal with this condition so it’s not missed. I believe and listen to patients when they tell you the pain is affecting their everyday lives.
My ovarian tumour wasn’t cancer as they analysed it for malignant cells and came back clear. Yet undiagnosed endometriosis o can lead some women to have cancer. A family friend of mine was finally diagnosed after 25 years and is still now recovering from Ovarian cancer. This shows the result of what can happen. I share this not to scare anyone but to say this is why women’s health should be a priority.
I have been in therapy since September 2023. To help be cope with everything that’s happened to me. It’s helped me reflect, grieve and move on. I am lucky and grateful to all the amazing doctors and nurses who helped me. Yet I know not everyone may be as lucky as me. I will be so I continue to go on this healing and health journey.
I have had to change my lifestyle and diet. Certain food trigger my endo and this is a lifelong condition. It may also come back and although I had stage 1 the pain wasn’t any less for me each month. I won’t ever be the same again but I say this not in a negative way but to say some experiences change you because it’s a part of life.
What can you do If you think you have endometriosis ?
1. Don’t stop pushing to get a referral to a endometriosis specialist.
2. Make a fuss if you can’t go private as I know not everyone can get access to this. It’s a right to speak up don’t give up.
3. Keep a journal of all your symptoms and track your cycle each month this will help you see patterns of your health so you can share this health professionals.
4. Think about your fertility if you know you want kids and plan for this by freezing your eggs or seeing a fertility specialist
5. Things can fibroids and cysts can be common with endometriosis so if you are suspect it don’t rule this out
6. If you have a family member or partner dealing with this get support and talk to others about it
7. It’s never normal to have a painful heavy period if a doctor or nurse medical gaslights or ignores you use education as tool to help you so they can’t dismiss you
I know this a long and properly tough one for many of you to read. Yet I felt called to share my story. Not just as part of my therapy and healing but to support any women who feels their voice for women’s health isn’t being heard right now.
As a careers adviser who supports your wellbeing it’s important you also look at how your company can help you if you have a condition like this. So do ask for support around this and know your right around this too.
Thank you for reading and please share with anyone you know could benefit from this. Wishing you career happiness and wellbeing in your career too.
If you want to work with me as your careers adviser and The Career Happiness Mentor you can apply for my Career Happiness Mentor program here - https://docs.google.com/forms/d/1_op9hNEHtgubM1Q5dfspOqSTonc5dsz9ktl1TpVa0Hs/viewform?edit_requested=true&fbzx=1337396816529605572#responses