This post is about my journey with fertility issues and being diagnosed with PCOS (polycystic ovarian syndrome) and Endometriosis.
Since starting my period at the age of 12 I have struggled.
I struggled with the heavy bleeding to the point where I could not leave the house and it greatly affected my day to day life along with the insufferable pain where I could barely get out of bed.
I was taken to the doctors by my mum at first because I was such a young age and was recommended to take the contraceptive pill.
I carried on taking the pill for some years, trying all different brands of contraceptive pills switching from one to another until I’d had enough of them not working, the pain was still there, the bleeding hadn’t gotten any better, it made my acne worse and give me a shed loads of other symptoms that I could no longer justify along with symptoms I couldn’t explain.
So I then at age 18 tried the contraceptive injection, this was better as it lasted 13 weeks and I didn’t need to worry about taking a pill every day but again I suffered side effects, it made my acne significantly worse and my pain.
I went to my doctor yet again explaining the pain and the symptoms I was experiencing and it was suggested that I could have polycystic ovarian syndrome.
I took 2 years to finally get diagnosed with PCOS (polycystic ovarian syndrome) after firstly undergoing 3 blood tests where the 3rd one was finally found my hormones to be abnormal which then triggered the doctors to send me to the womens hospital to get a hystoscopy and an ultrasound. The blood tests concluded that I had polycystic ovarian syndrome- my hormones are unbalanced, I produce very little progesterone and too much estrogen.
The hystoscopy was not a pleasant experience and hurt so bad that I was stuck at home for 3 days afterwards.
They then concluded that I have 24 cysts on average on each ovary that keep replacing. I am producing too many eggs in my ovaries that do not reach full development and rather than getting released they remain there. Luckily I still have monthly periods (most months) which is a good sign but this overall concluded that I have cysts and polycystic ovarian syndrome as some women only have the syndrome and some only the cysts, I have both.
I thought after this I would get the help I needed especially with pain management but I was definitely wrong.
Contraception wise they then recommended the non-hormonal coil so I decided to give that a try and I thought it would be better because now knowing that I have a hormonal issue the last thing I wanted to do was to put artificial hormones in my system and make things worse.
This was definitely the worse mistake I could have made!! You are not meant to feel the IUD coil at all but I could feel it all the time and not only that I was NOT warned that it could make me bleed continuously for 4 months! The pain was 10x worse and I wasn’t able to barely function or move or have anything to do with my partner at the time due to the pain.
I soon got it taken out!!!
I carried on going to my doctor after the diagnosis still asking for help with the pain, the fatigue and the symptoms I experienced.
Every time I mentioned the pain I felt like no matter how many doctors I tried I wasn’t being taken seriously, I was given painkillers (zapain- codeine and paracetamol) and told that was all they could do. I felt like because it was pain in the uterus and abdominal area and because I am a woman the type of pain I was experiencing wasnt taken seriously so in a way period pain and getting diagnosis for fertility issues is a feminist issue.
(They did recommend the mirena coil IUD but after already having one with such horrible effects no way was I about to try that again!)
When I mentioned the fatigue they literally just said well its too difficult to diagnose chronic fatigue syndrome, it can be part of your depression, are you just tired because youre depressed. This was the most infriating response I could have gotten.
I went through university struggling, some of my friends and students I go to class with would have wondered to themselves where I was most of the time, quite a lot of the time I had to stay home as my fatigue and pain was so severe I couldn’t get out of the house.
On really bad days where i had to go to university i spent the day dazed out on painkillers, struggling just to walk up the stairs, stay awake and concentrate long enough to pay attention in a lecture, I would have to get taxis too and from university as I was too exhausted to walk from the bus or train.
I’ve been in this same pattern until recently.
In April 2018 I moved back home to North Wales after finishing university and I asked my old doctor from here to refer me to a gynecologist here. After waiting a few months I went to the gynecologist, explained my symptoms and most of all my pain and the response I got was “PCOS isn’t a painful conditions, something else must be causing the pain?!”
I was totally dumbfounded by this, why didn’t any other doctor tell me this??? I’d been to see so many surely one could have told me this, or perhaps it wasn’t true.
They went through the symptoms of Endometriosis with me and after a long discussion with the gynecologist we found that I have all the symptoms of this condition and my mum also has this condition which happened to increase my chances of having it. There and then they decided to send me for a laproscopy to investigate.
I waited 8 months to get a laparoscopy appointment and 2 days before they cancelled on me for a stupid reason but luckily they had a cancellation and I was able to get the operation a day before my actual operation should have been- Wednesday the 24th June.
Due to the short notice no- body was able to come with me which made my anxiety sky rocket to a whole new level that no amount of meditation, positive thinking or deep breathing would fix.
I wasn’t nervous upon arriving, meeting a lovely lady and having an in depth discussion about our lives and a little laugh that I nearly broke the TV in the waiting room helped.
I was shattered due to not getting in the previous day until 2am due to seeing pink the previous night plus I was on my period… I only started getting nervous when they told me to put my gown on, the terrible hospital knickers and the awful stockings.
After getting dressed I had to talk to both the gynecologist who was conducting my operation, she was a woman which made me feel 100% better as every other gynecologist I’d seen previously had been a man and very unsympathetic towards me.
My gynecologist performing the operation this time was so compassionate, patient, methodical and respectful. She took the time to talk me through all my insecurities, about every step of the operation and the conclusions she may come to after the operation- she was even kind enough to fasten my gown as I could not reach the ties to fasten it properly.
Next I saw the anaesthetist, he was very cold, to the book and just wanted to ask me the routine questions about putting me under.
After speaking to both the anaesthetist and gynecologist all I had to do was wait for the nurse to come and get me when they were ready for me in the theatre.
I thought I would be nervous with the waiting so I brought a magazine with me in my overnight bag ( they always ask you to bring in an overnight bag in just in case), I also brought my charger and headphones in case I wanted to listen to an audiobook or podcast or some music.
I did none of these, I attempted to read my magazine but I was getting more twitchy and more nervous as time went on, I must have gone to the toilet 3 times within half an hour (I wee a lot or think I need a wee a lot when I get really anxious), and the factor that I was uncomfortable in the hospital knickers because my sanitary towel would not stick to them properly.
After about 30-40 minutes a nurse came and asked me for a pregnancy test which I blatantly said there was no point of as I’m not sexually active and haven’t been for some time they told me it’s just procedure and I had to do one anyway.
Once handing it to a nurse I was told they were ready for me in the theatre and another lovely nurse walked me down the hall into another ward, I was sat down where I had to answer the same routine questions again and she led me to a small room, theatre room 1.
This room was tiny but had room for some cabinets, a medical bed, a heart rate machine and 6 people. I was sat on the bed, given a cushion and made comfortable, introduced to 3 out of 6 people and a needle was put into the back of my hand so they could give me fluids for the operation- I couldn’t really feel the fluids, the needle hurt though.
It was at this point I experienced the worse panic attack I’ve had in a long time, it was so bad they had to give me more drugs to slow heart rate down before giving me the anesthetic. It took them a good 10 minutes to calm me down, the nurse beside me was a life saver and so kind, compassionate and reassuring.
They then gave me an oxygen mask and told me it was just oxygen, it was for a few minutes but then I soon smelt and tasted the anesthetic and within what felt like seconds I was out of it.
I woke up in what felt like a second. I woke up stressed and disorientated, I went into another panic attack, my head felt awful, I felt so confused that I didnt know what had happened to me or what room I was in.
I remember banging the metal bars on my bed, trying to pull out the needle in my hand and feeling like I was going to fall right off the bed. My chest was killing me because my heart rate was so fast and the pain soon hit me like a freight train, it was such a shock to the system that I instantly started crying my eyes out.
The nurse who was there the first time was there again holding my hand calming me down, she was honestly a life saver. They give me morphine and the pain slowly started to numb down a little. The gynecologist I saw earlier came to me and explained a little bit to me what had gone on during the operation but she could tell I was out if it and disorientated that I wasnt going to take any of it in so she agreed to come back to see me later on.
They rolled me back to the original ward, the lovely gentleman who was pushing my bed kept me distracted by asking me questions about my interests, I ended up mentioning how much I loved bees and even when I was dosed up with morphine and feeling groggy and confused as hell I could still teach people about bees and make them laugh- what can I say it’s a gift. Keeping me talking was the best method at that time as it kept me distracted from the pain.
As i came into the ward I was soon reminded of how much pain I was inland it took some time for the pain to go away. I soon noticed that my underwear was gone due to the draft on my bum, i soon covered myself up and asked when I could my own underwear and clothes on again to feel more comfortable but I wasnt allowed to yet, I was passed some tissues by the husband of a patient next to me and I spoke to them a little and this helped me to unwind aand relax a little.
The nurses came and gave me something little to eat and some water and a cup of tea as I fasted for the operation and was starving and they put a tube down your throat during the operation- my throat was is dry and sore I felt like I could barely breathe without it stinging.
After about a little while the gynecologist came back and asked to speak to me…. this is what I’d been dreading.
I somehow knew within every ounce of my being that I had endometriosis but to what degree and how would it affect me in the future if I ever want children? Did they get rid of it? Is it just in the womb? Is it manageable?
The gynecologist went on to explain to me that she had found 4-5 large spots of Endometriosis inside the uterus which she was able to mostly burn off however, the rest of it and a considerable amount of it is behind my uterus attaching my uterus to my bowel. She showed me the pictures – I was horrified by how much there was and she soon said “no wonder you’re in pain all the time”.
At this point I did not know how to feel, I felt relieved somewhat because now I had a reason behind the pain and years of suffering but then I was hit with tyre reality that I now have both PCOS and this, i felt like i had the worse luck in the world when it comes to being a woman and if course I had to ask the question of- would it be possible for me to carry children and conceive in the future? To this I got a rather vague and unsatisfactory answer- “You could try conceiving naturally and see what happens, see if you can get pregnant, it may take a long time and be very difficult… actually being pregnant would be good for your Endometriosis because it would stop growing for 9 months.”
Is this a joke I thought?!
She then told me I would have to await biopsy results to see what stage Endometriosis I have, be referred to a bowel specialist where they could again go through the same operation but more extensively to burn the Endometriosis off my bowel and from behind my uterus and that I would be given the contraceptive pill (again) but rather than the traditional way of taking it for a month and then having a period, I have to take it for 3 months straight then have a period because it turns out that my periods make the Endometriosis spread and grow causing the issue.
I soon got dressed after seeing the gynecologist, thanked all the lovely staff, said goodbye to everyone and went home.
It is now a week after my operation and I am still recovering.
The remaining of the gas is just now coming out of my system and I no longer feel nauseous and sick, my appetite is slowly coming back.
(The pain gets trapped behind your shoulders and it is the most painful feeling you could imagine exactly like someone stabbing you in between the shoulder blades. The gas makes you constantly feel sick and makes your stomach huge- I felt like a hippo).
I have done nothing but sleep and rest the entire time, the period type pain in my uterus has been 100x worse than normal and so has my fatigue., I constantly feel tired and out of it, I feel like I am not entirely here, nothing seems real, I feel like I’m still in a dream land a little, my head feels like I’ve been on a 10 day bender and I’m on a rocking boat. It’s not a pleasant feeling.
I have 3 stitches in total that are relatively small but the pain is internal I am so sore that its painful to just move around and I found myself getting out of breath trying to do the simplest of things.
All this has definitely had a mental toll on me too. I feel emotionally drained and defeated and quite sorry for myself at the moment, it is by no means easy news to take.
So for the mean time I am continuing to rest, I have an appointment with the bowel specialist in October, I am waiting for my biopsy results and I am hoping now I have the diagnosis of Endometriosis if I go to my doctors talking about the pain I get on a regular basis they will now take me seriously and help me!
I’ll keep you updated.
Thanks for reading.
Sorry it’s been so long.
Until next time.