There is so much to remember I just hope I managed to get it all down and didn’t go on for too long. This is all very personal but I know how important awareness is so if this helps more Women recognise their own symptoms then me feeling little uncomfortable is completely worth it.
What Is Endometriosis?!
Endometriosis occours when tissue, like that of the lining of a women’s uterus, grows outside of it. This tissue can grow anywhere but it’s often found on organs in the pelvic and abdominal area. When a woman is about to menstruate this tissue swells and sheds each month but because this tissue has also grown outside of the uterus it cannot escape the body and therefore causes irritation (to put it lightly). This tissue is like glue and it can really mess up ones insides. So far there is no permanent cure and diagnosis can only be confirmed through surgery. Often in surgery this tissue is zapped away and many women choose to have Hysterectomy’s but this only works if all of the tissue grows on the organs removed. If any is left over it will grow back in time and you will still experience pain. Diagnosis take women approximately 7 years but it is usually longer.
Where It All Began
I have suffered from IBS – Irritable Bowel Syndrome since I was 5 so I’ve always suffered with severe stomach pains. As I got older the pain got worse and this is due to a few factors, grief and extreme anxiety. For years I underwent tests, went through multiple medications and therapy and nothing helped this pain. I missed most of secondary school and found it very hard to cope when I did attend due to being bullied and worrying about the embarrassment of becoming unwell outside of my home. I was very underweight and only ate when I got home from school to try and avoid being unwell when out, I began to fear food and panicked anytime I ate because I knew I’d be unwell. I found out I had an intolerance to dairy so I decided to become a Vegetarian (now Vegan) to see how that would affect me.
I started to feel better and I was able to go back to school, the people in my year just about started to become friendly with me, I started putting on weight and I began to relax and think that it was all over and I could finally live a normal life. Then BAM !! my periods started age 14 and the pain I had experienced before suddenly doubled and I genuinely thought I was going to die from the severity of the pains I experienced monthly. So back to the GP I went and more tests were done, contraceptives were offered which just messed up my cycle and took a toll on my already fragile mental health and even pregnancy was offered as a solution, I was 16 at this point and not in a relationship. The only thing that could be found via ultrasound were Cysts on my Ovaries, some had burst and some weren’t big enough to be removed. I was told that I just had to take painkillers and that the Cysts would either go away themselves or that I would have to wait for them the grow to 10cm before surgery would be considered, my Cysts were only about 2.5cm and never changed.
When Was I Diagnosed?
After years of begging for help from my GP, trawling through the internet, considering a Hysterectomy, being admitted to A&E multiple times to only be made to feel like I was being dramatic and making everything up and even contemplating suicide to escape the pain, I stumbled across this website about Endometriosis and I broke down. This is what I had, I found it, I didn’t have to Pidgeon hole myself into any of the symptoms, this was me exactly and I just remember sobbing for hours because I finally had an answer and knew that I wasn’t ‘weak’ or ‘couldnt handle normal monthly pain’. I told my Mum and she agreed but was wary me of getting my hopes up to only be disappointed. I made an appointment with my GP and told her that I
knew thought I had Endometriosis and asked her to refer me to a Gynecologist. She said she just wanted to try a few more medications first before referring me, I was now 21. After trying Provera and the Depo shot, which just made me bleed continuously for about 6 months and sent my emotions into complete meltdown, my GP finally refered me.
When I first met my Gynecologist he was really sympathetic and helpful. He said that it definitely sounded like I had Endo and that he would send me for ‘one more ultrasound and a blood test as a precaution’ but that he would most definitely be operating on me at some point.
I had a blood test and that gave me some news that I really wasn’t expecting, it turns out I have low Ovarian reserve. Anti-Müllerian Hormone, or ‘AMH’ is a hormone which is given off by developing follicles, which are egg sacs containing immature eggs. AMH naturally decreases with age. I was told by my GP that I had a level of 17 and that this is a level that would usually be seen in a women a few years older than me. The level goes from 3 – 30 so I know it’s not too low which was a relief. Unfortunately my GP didn’t have a clue about what any of that meant and couldn’t answer my questions so I had to wait and see my Gynecologist.
He confirmed what my GP had told me and said that my best option was to freeze my eggs and he urged me to consider taking out a loan to freeze them and to pay for IVF further down the line. He also said I should have serious talk with my boyfriend and maybe consider trying for children sooner rather than later. My mind was all over the place and I found it hard to take in most of what he was saying but when I left I did just what he said. I looked into loans and decided that it was too risky to get into debt for something that may never work. I had many high emotion talks with my boyfriend and it put a real strain on our relationship as he said he wasnt ready for children and didn’t really want to think about them at our age. I felt like a ticking time bomb and worried that with everyday that went past, with every bout of pain, that my eggs were decreasing by the minute.
Fast forward to August 2017, aged 23, I had a Laparoscopy (key hole surgery) and a Hysteroscopy (inspection of the womb) where I was told that I have stage 3 Endometriosis; there are 4 stages. The tissue was zapped away and luckily the tissue hadn’t grown on my Ovaries as the tissue will destroy, and for want of a better description, eat your eggs.
After my diagnosis I didn’t really know how to feel, I’d be fighting for an answer for 9 years and I finally had one, I could stop trying to convince people that I was actually unwell and that I needed help and I could stop trying to find an answer and try to move forward with my life.
During my operation the Merina coil was inserted, I haven’t had a period since a about June 2017 and I knew I definitely didn’t want them to start again. I haven’t had much pain since my operation and any pain that I have had is nowhere near the pain I used to experience and I will gladly take that over the pain I had before my surgery.
The Healing Process
My goodness did I underestimate how unwell I would be !! During key hole surgery, gas is pumped into your cavity to move other organs out-of-the-way so the surgeon can see what they’re doing. Unfortunately the gas has to leave you naturally and I just thought that I’d feel a bit uncomfortable, be a little gassy and that it would be gone … this gas wasn’t leaving so easily. I was like a lava lamp, every time I breathed in my stomach flipped and I would feel so nauseous, be sick and still try to be sick even though I hadn’t eaten because of how unwell I felt. I had an awful pressure in my chest that made me feel like my whole body was vibrating and pain in my shoulders from the gas too. I felt so trapped in my own body again and I hated it, I couldn’t get comfy, I couldn’t eat and I couldn’t go to the toilet either even though I had the urge to go, my whole body just seemed to shut down. I had to get my Mum to pat my back to try to make the gas escape and it worked a little but for the most part I had to walk up and down my upstairs landing with a bucket in my hands as when the gas moved it made me sick.
I never had any pain from my incisions apart from the obvious tenderness and the coil has never caused me any problems either, I’m just thankful I had it fitted during my operation as many women have told me its horrendous having it fitted when awake.
What Happened Next
After a few horrid weeks I was back on my feet and although a little fragile I was on the mend. I went back to my GP but this time I had a different experience. I walked in and before I had even sat down, without him looking at me, he said ‘so, still not pregnant?‘ I was in complete shock and very confused, I said to him ‘well no, you fitted me with the coil’AND IM NOT TRYING TO GET PREGNANT YET !! all he said back about the matter was ‘oh yes, that would be quite difficult then’ while laughing. He didn’t have half of my notes, didn’t have the photos from my operation that he said he’d have and very nonchalantly told me that my Ovarian reserve level was now 19 !! He tried to skim over it but I interrupted him and said ‘I thought you said that it wasn’t going to get any higher?!‘ and he said ‘ohh, well it can fluctuate but just because it’s a level of 17 doesn’t mean its going to jump to 30’ I said that I had spent the last few months in a permanent state of anxiety, that I was trying to save up all of my money and that because of the stress my relationship nearly ended. He didn’t understand the severity of what he had said and didn’t apologise either. Once again he told me that I could have my eggs frozen and to consider taking out a loan or that I could wait until March 2018 and have the test again. I said I’d wait and have the test again.
After that appointment I was so angry, I broke down and apologised to my boyfriend for all of the stress and pressure I had put on him to decide about when to have children and the uncertainty of if this would be what broke us up.
Where I Am Now
I haven’t had the test again, My birthday is next week and I didn’t want any bad news to ruin it. I also still have no clue about what to do with my eggs. I don’t know if its best that I freeze them or wait and hope that there are still enough and in good condition to conceive a child naturally. I want it to be my decision and not my body’s. I’d like to think ‘what will be will be’ but it’s very hard when I’ve wanted children for as long as I can remember. It’s a risk either way whatever I choose, freezing my eggs and trying IVF isn’t a 100% guarantee and neither is waiting to try to conceive naturally.
I’ll be honest, I’m not ok, I’m struggling to deal with having low reserve and not knowing what to do about it or what will happen in the future just makes it worse. Whenever I see children or a pregnant lady, which is often, especially where I work, it’s a constant reminder of this issue and that it might not happen for me.
I will post an update on things in a few months and hopefully I’ll have a clearer idea about what I will do and fingers crossed my reserve hasn’t dropped any lower !!