My Story with PCOS and Endometriosis

For almost 3 years now, I have been suffering with two conditions, which are sometimes debilitating. One minute, I’m fine going about my daily routine and getting on with my life. Next minute, I am curled up in the fetus position as the pain increases. Many people close to me know about my pain and what I go through almost every day. Seeing as it is Endometriosis Awareness Month, I wanted to share my story living with PCOS & Endometriosis.

In this blog post, I am being very honest and open about my experience which isn’t very easy to do. Before, when I have opened up about my health issues, although I received incredible messages of support, I did also receive horrible comments so as you can imagine, it has taken a lot for me to actually compile this post. I really wanted to write this post because over the weekend, I received several messages from people saying they were completely unaware that I had these conditions and that made me want to be honest. Truly honest because I hide behind the glam and adventurous life of my Instagram photos and often put on a fake smile so people won’t know I’m suffering. The more people talk about things like Endometriosis and PCOS, the better. If I can help one person with sharing my story, that is all I want because you can often feel lonely when you are suffering.

Okay so what is PCOS and Endometriosis?

Polycystic ovary syndrome (PCOS) is a hormonal disorder common among women of reproductive age. Women with PCOS may have infrequent or prolonged menstrual periods or excess male hormone (androgen) levels. The ovaries may develop numerous small collections of fluid (follicles) and fail to regularly release eggs. 

Endometriosis is a common chronic inflammatory condition where tissue, similar to the tissue that normally grows inside the uterus, grows outside of the uterus. The most common places where endometriosis occurs are the ovaries, the fallopian tubes, the bowel, and the areas in front, on the back, and to the sides of the uterus. It can also be found on the bladder and bowel. In some cases, it is found outside the pelvis (lung, skin, brain, diaphragm).

So let’s go back to the beginning.

I never really suffered with period pain from the age of 8 up until 22. Don’t get me wrong, I had pain and cramps but more so before or after my period. I’ve had dealt with pretty bad abdominal cramps most of my teenage life. From the age of 8 up until I was 23, I was in and out of A&E as I was always struggling with the pain. But every time I went into the hospital, I was dismissed. I was told it was rumbling appendix, IBS, I’m not clearing my bowels properly, that I was looking for attention or the worse of all – it’s just period pain etc etc etc. I was never taken seriously. However, this all changed in 2016. Around February 2016, I started to get excruciating cramps. Each month it got progressively worse.

Since 2016, I have rarely been without pain. I often find it difficult to describe the pain I endure from one end of the month to the next. It’s easy to think that because this is a gynecology issue that it’s just the time of the month you are in pain. Well, I wish that was the case. Let me talk you through what my cycle is generally like;
The first few days of a new cycle, I will still be experiencing pain from my previous period. The level of pain will be about 4 or 5 out of 10. By day 6, the pain is almost completely gone and I get to enjoy some pain free days (if I am lucky!!!)
Around day 10 to day 14 of my cycle is ovulation and this is when my ovaries start to act up again. My pain will start, and depending on which ovary, the pain levels vary. If it is my right ovary, I am more than likely clutching on the my stomach with the pain and cradling a hot water bottle from the minute the pain arrives.
My acne will start to get worse and I feel exhausted all the time.
As soon as ovulation is over, it’s now PMS time (Premenstrual syndrome). My moods change dramatically here. I become much more anxious and sad. My acne continues to get worse. I lose my appetite. My pain begins to increase.
Then it’s time for my period – the pain is ALWAYS 10/10.
Sometimes it’s sharp and sudden, it feels like someone is twisting my insides.
It often knocks the wind out of me or makes me lose my thought in mid-sentence. It can be piercing, numbing, pounding, stabbing, throbbing, there is so many ways to describe the pain as it changes all the time.
I often struggle to stand up straight or sit properly when I am in pain.

I had my first operation in July 2016.

I spent 5 days on a trolley in A&E before they knew what was wrong with me. Once they opened me up, they discovered that the ovarian cyst had burst, which was why I was in so much pain and so unwell. I had my first laparoscopy which resulted me having three incisions on my stomach. I was told I just had an ovarian cyst and that it was nothing to worry about. Recovery took over 8 weeks. My pain continued.

Almost 6 months later, January 2017, I ended up back in A&E with the same pain. I was rushed through A&E and was given a room immediately. Similar to June, they were unsure whether or not it was my appendix or other cyst. The doctors decided to operate eventually because I was not eating at all because of the pain. I had another laparoscopy. This time, I had 4 incisions on my stomach. This time, the doctors agreed to remove my appendix once they have me open so if this pain happens again, we would know straight away it isn’t my appendix. After this operation, I was now informed my right ovary is polycystic but left ovary is completely fine. Recovery took another 8 weeks. My pain continued.

The Pill

Both PCOS and Endometriosis can be controlled if you can take the contraceptive pill. Great? Well, not for me. I have been on 3 different types of pill over the past 3 years and I had to stop taking all of them. I was on Cerazette for over 10 months and then Yasmin for 5 months. I decided to stop taking both of them due to them both causing my mental health to decline. As bad as my depression and anxiety was on Cerazette while living in Tarragona, I consider my months on Yasmin to be the worst of my life. I had never sunk further into a horrible mental state of mind then when I was on that. I wouldn’t want to get out of bed. I would fight with my Mam (and if you know my Mam and I, we don’t fight!!). I would cry over everything. I was gaining weight. I was on edge all the time. It was horrible. I wouldn’t have minded taking the pill if it was helping my conditions but it wasn’t; I was still in excruciating pain almost every day each month. So I stopped taking them. In October 2017, I was prescribed Mircolite (I think) which was a different type of pill towards Yasmin and Cerazette meaning it shouldn’t affect my mental health – amazing!
4 days on this new pill and I had to stop taking it as I had the worst migraine I ever had and my doctor informed me that if I had taken one more pill, I would of had a brain haemorrhage. Fantastic. So my pain continued

In January 2018, I had an appointment with a surgeon and he recommended that I have another laparoscopy. So I had my third operation. I flew home from Madrid a day early for this operation. I had 3 incisions this time. Post operation, my surgeon said I had many adhesions on lining of womb, potentially might have endometriosis, as well as a cyst but I really need to see a gynecologist to confirm.

After the third operation and several disappointing appointments with doctors and gynceolosts unable to come up with a solution for my conditions, I went on the search for a second opinion.
In June, my GP referred me to another gynecologist and once the latest blood tests came back, it was evident that I needed to be seen as soon as possible. Mam rang this new gynecologist on the Monday, I had an appointment on the Wednesday and was having surgery on the Friday. That’s how serious we are talking my condition is. After this operation, I was informed I have 2 severe Polycystic Ovaries and stage 1-2 Endometriosis. My gynecologist was hopeful that the operation and medication he prescribed me would keep my condition at bay for at least 5 years but said it could be 5 months. He also told me that he drilled my ovaries which would mean my acne would clear up… still waiting on that to happen.

Medication

When leaving the hospital this time, my gynecologist gave me a list of mediation that he said I’d be more than likely taking for the rest of my life.
The first tablet – Metformin! I got a bit of a shock when I heard I was on this tablet as this is more commonly known as a tablet for diabetics. I take two tablets a day. One of the major side effects with this tablet is the nausea and my goodness, it is bad. There is some days I can’t eat at all because it is so bad. Usually a bottle of Lucozade Sport (the Raspberry flavor) would ease it but I became so dependent on that, that now I can’t look at it!!! The main reason I take this tablet is to help level out my insulin levels and maybe reduce the amount of cysts I produce but sadly, I haven’t seen much improvement yet.

Two other tablets he prescribed for me were Mefac & Cyklokapron. These were for when my period arrived to ease the pain and make me bleed less (TMI again, sorry!) Sadly, once my period arrived, I would be so dependent on these tablets, I would be crying in pain looking at my watch to see when I can take the next tablet and surely that isn’t right?

Well, by November, my pain was back and just as bad. I prolonged going to see my gynecologist until February as I was going to New York in January and didn’t want to have an operation before my holiday!

March 2019

This brings us up to now, March 2019. On Friday March 1st, I had my fifth operations for PCOS and Endometriosis. I had the Mirena Coil inserted, some biopsies taken and my smear test done. I am currently lying in bed recovering because my doctor explained to me that getting the coil in mirrors your period pain until it adjusts to your body. As you can imagine, I suffer excruciating pain during my period so I am in a lot of pain and very uncomfortable right now. I am praying that this will help ease my pain dramatically. It is basically a waiting game right now but I am willing to do whatever it takes to ease my pain.

Pain

You’ll often find me doubled over in pain, clutching my stomach. It often feels like pressure, something throbbing, as if something is about to burst. The pain is sometimes deep and heavy. Sometimes it feels as though someone is stabbing me. Some times, when I am in bed at night I can’t move because if I move, this shooting pain will start again; I’ll be sweating, I’ll be putting the pillow in my mouth as to not scream in pain to wake up my roomates, my chest against my bed, grasping the sheets tightly, tears will be streaming down my face, I’ll pull my knees up to my chest in the hope that the pressure would relive me some pain. I’ll take the strongest pain relief I can and watch the clock until I can take my next batch. Sometimes, I try not breathe too much because that causes the pain to increase, so I hold my breath until the rippling pain comes again.

Side effects

Apart from the obvious excruciating pain these conditions cause, there is many other side effects too. I have always suffered with acne and it was so bad at one stage, I went on Roaccuntane for it. Once I finished my stint on those tablets, I felt like a new woman. I had just a few acne scars but nothing like it was before. Until my PCOS started and my acne is back and sometimes, it is as bad as before.

Weight loss and gain are two other side effects. I lose weight because I can’t eat with the pain. However, when it comes to around the time of my period, when I eat normal food (I don’t over indulge in all the stereotypically PMS food), I gain weight and retain fluid.

Back in January 2017, I wrote a blog post about why I was wearing a wig. Upon research and remarks doctors mentioned, a side effect of Endometriosis is to loose hair. The amount of hair I have lost since July 2016 is so upsetting and it isn’t growing. I look after my hair so much and treat it so well, so you can imagine how upsetting it is to see lumps of your hair come out when you brush your hair sometimes. However, a side effect of PCOS is unwanted hair growth. So shaving is like an everyday task for me these days and Jesus, I am forever plucking my eyebrows these days. If only the hair growth side effect worked on my hair on my head!

Various other side effects are:

• Sweating – I sweat so much, it’s embarrassing. I have always had a fear of smelling bad so I am always spraying myself with body sprays and deodorant but the sweating side effect is getting worse and no matter how many showers I take or antiperspirants I use, it doesn’t fully work
• Mood swings – Even when I’m not on the pill, I am still a moody bitch when it comes to my PMS and around my period but simply put, it is down to my pain. My poor mother gets the blunt of all omy outbursts sadly.
• Anxiety & depression – You can imagine it would affect my mental health greatly. I hate letting my pain get in the way of my life. It is so hard to stay positive all the time however. I am always anxious as to when the pain is going to come, always on the edge.
• Loss of appetite & watch diet – There could be several days where I could only be able to stomach one meal because the pain and nausea are ao bad. And because of the Metafornin, I now have to lead a gluten free life which is fine by me as I also have IBS but it is tough at the best of times.
• Fatigue – I’m constantly tired. But I don’t sleep well at night due to pain and discomfort.
• And yes, it does hurt when I have sex – every time!!!

Scars

From all my operations, I have many scars. My belly button doesn’t really look like one with all the scars it has. I have become so insecure with my stomach because of my scars. Although they have all healed well, you can still see them, and I know they are there. I think I counted 14 scars the other day in the shower.

Babies

I have possibly never thought more about babies than I have these past few years. Being honest, I don’t know what the story is with me and having children. Having both PCOS and Endometriosis both cause infertility. However, I have time on my side. So hopefully, when it comes to wanting baby Mateo and Rafael (yes, I have picked very Spanish baby names, I KNOW!!!), I will be able to have them.

1 in 10 women

1 in 10 women deal with this pain every day. They pop some pain relief, put on a pain patch and a heat pack and put on some fake smiles just so they can function and get on with their lives.

I am one of those people.

Many people messaged me over the weekend saying how they never knew I was suffering because “You are always so happy…” “You are always smiling…” “You are always off on adventures and doing things…” – Yes, I know. Several people have told me I must have incredible mental strength and to be honest, I don’t think I do. I just don’t want to give in to this condition. I won’t let Endometriosis or PCOS live my life. I won’t let them dictate what I do. Granted, I do have to listen to my body and when I can’t do something, that’s ok. After my first operation, 10 days later I flew to Brazil for the Olympics as it was a dream of mine and hell, there was no way I was missing it. After the second operation, I started my thesis 3 days post op and completed it within 4 weeks, and I got an A1 on it! After my third operation, I started a new job 2 weeks later. After my fourth operation, this is probably my most reckless idea, but I went to Longitude on my own. And now, after my fifth operation, well, life is a bit hectic at the moment. The moral of my story is, I’m not letting this win over me enjoying my life. Everyone always asks why I’m traveling so much and going to various events and gigs if I’m unwell. Well, why not now? It gives me something to focus on. Helps me get through my times of pain! I put on a pain patch, put on makeup, get dressed up, put on a smile and do what I want! Almost 90% of the time, when I am travelling or at a concert, I am in pain. I do laugh when I am travelling because I have a medication bag full with tablets and patches just to help me get through a few days! But I won’t let it stop me. I won’t give in to this pain.

I just have to be brave and stay strong!

So there you have it. I hope you appreciate me opening up and sharing my story. We shouldn’t be ashamed of our pain, but we also shouldn’t let it define us.

*Side note – I am currently in extreme pain and if I made any mistakes or left anything out, that is why. I actually feel like I need to get sick with the pain I am in right now!*

Sincerely,
Sarah Jane xx