My Endo Story...
By Jess
I remember getting my first period in the school holidays just before starting high school. I was 12 years old... My mum had given me the rundown on what was going on and had given me a book to read all about it. At the time I had felt really grown up, especially because a lot of my friends hadn't gotten theirs yet.
My cycle was fairly irregular for maybe the first six months, which mum had said was normal. She had also tried to show me how to use tampons, but the thought of sticking them ‘up there’ just grossed me out - I couldn't do it! So pads it was...
At school I remember leaking a lot on my school uniform, and having to clean my skirt in the toilet using the hand dryer to dry it off. Though, when I eventually made the change to tampons I thought "why didn't I do this sooner?’’
My periods became a regular 28 day cycle and I always knew the morning it was going to arrive. I had pain and cramping; sometimes I would just ‘ride it out’ and other times I would take some Nurofen. Sometimes I needed pain relief the next day too, but it was usually just the first day/morning. I would bleed for about 5 to 7 days and I used to be so jealous of my mum - she had no pain and only bled for 3 days so I never really thought anything more about it. I just figured that was my cycle...
I was lucky though, my period never stopped me from doing anything. Yes, sometimes I was uncomfortable and in pain but I still went to school, I still played sport and went to family events. I remember one Christmas morning being in quite a bit of considerable pain, I just took Nurofen and soldiered on...
Some months I would be super emotional too and would cry at the drop of a hat. My two younger brothers would always tease me about it, which obviously made it worse as a teenage girl.
I was 21 when I went to the doctor to go on the pill because I was sexually active. He didn't ask me about my cycle; instead he just took my blood pressure and gave me a script for Trifeme as, “…That’s what I give all the girls your age."
I was on that pill for about five years when I started getting headaches, so went to another doctor and he told me that "…It was most likely because of the estrogen levels in your pill," and changed me to Levlen... He didn't ask me any questions about my cycle either, and I'm not even sure he took my blood pressure...?
While I was on the pill I knew exactly when I would bleed so I would take Nurofen before I had any pain. I also remember being constipated the first day of my cycle, but again I didn't think anything of it.
As for having sex, some positions were uncomfortable and painful but I figured that was just normal too!
I met my current partner when I was 27 and knew pretty early on that he was it. I had this plan in my mind that I was going to be married by the time I was 30, and then we would start having children. Let's just say life didn't quite go according to that plan...
When we were ready to start trying for our first baby I was 30 and had stopped the pill. As the months went on my period got more and more painful. The cramping was horrendous; sometimes the bleeding was so heavy it felt as if the insides of my uterus were trying to push through my vagina. The pressure and pain was unbearable! I was still going to work and would be on my feet all day, so it was a relief to get home and lay down with a heat pack on my stomach.
With regards to the baby making I was trying everything. I was taking my temperature, doing the whole ‘legs up in the air’, certain positions, lubricants and ‘trying to relax’...
I always thought I could just come off the pill and BOOM I would be pregnant, just like the majority of my friends and family.
After 12 months of trying (along with the worst periods I had ever had) I went to my doctor and was told, "…I could do blood tests but I'm going to refer you to a specialist". I was referred to a gynecologist (who also happened to be an Endometriosis Specialist/Surgeon) and my partner and I had to attend the first appointment together. It was November 2015, and I was 31. He went through our medical history and he was the first doctor to ask me about my cycle. The pain, bleeding and gastrointestinal issues, he asked about all of it. He also did a pelvic and vaginal ultrasound and it was then that he told me I had Endometriosis. He told me “…I would need a laparoscopy to confirm the diagnosis,” and that “…Within the six months after surgery I might fall pregnant naturally, but if not I would need to do IVF.”
I remember him also saying, "…You're very quiet and not saying much at all.” After our consultation with him we both had to have blood tests, and it was when we were waiting together that I started crying but when we got home I completely lost it. I just kept thinking ‘I might never have children.’ My partner was always my rock, he is amazing as he always knew how to support me and my emotions...he just held me when I was a blubbering mess.
Once I started researching Endometriosis all of my symptoms over the last 19 years made complete sense...
I had booked my laparoscopy for January the following year. I was so nervous and scared the morning of my surgery, as I had no idea what they would find. I had these horrible thoughts that I would wake up and be told I needed a hysterectomy. You also need to do a pregnancy test prior to surgery and I was so hopeful that I was, but unfortunately that was not the case. After one and half hours of surgery I was diagnosed with Stage IV Endometriosis. I had it on my ovaries, my uterus and my bowels. I had also developed an infection in one of my incisions and needed antibiotics. The bloating, the cramping after surgery and that first bowel motion weren't a very nice experience... My partner had to put my compression stockings on each morning for me and again, really stepped up and looked after me. I also needed three weeks off work to recover from the surgery.
Because I wasn't eating as much as I usually would I lost a lot of weight. Also, my muscles were weak as I wasn't able to exercise. Eventually I gained my strength back, and gradually made a lot of diet and lifestyle changes.
A few months after surgery my periods became manageable and bearable. I didn't need any pain relief and felt that the surgery had made a massive difference. As it had been six months after the surgery without falling pregnant, it was back to the fertility specialist.
He was pushing us to do IVF and my partner and I weren't comfortable with that, so we ended up seeing a different fertility specialist. We did an IUI (intrauterine insemination) which was unsuccessful so I also had my tubes checked. Fortunately they were clear. She was also pushing me towards having another laparoscopy to improve my fertility but I wasn't keen on that. I was worried about scaring and also losing more eggs, as my AMH (Anti-Mullerian Hormone, which is a hormone secreted by cells in developing egg sacs (follicles)) had dropped significantly after my first surgery. We decided not to proceed any further with the mentality that if it happened, it happened...
However, it wasn't as easy as that. I was struggling mentally and because everyone around me was falling pregnant, each pregnancy announcement would set me off. Baby showers would set me off and celebrities having babies would set me off. I was honestly so happy for these people yet so sad for me. Each month I was still living in hope that it would happen and then each month I was shattered again when it didn't... It was an emotional roller-coaster.
For me, the year of my first niece being born was one of the toughest years mentally and I still regret that I wasn't as present for her. I had distanced myself from her, my brother and my sister-in-law because I resented them; I wasn't coping. My partner was really the only one that knew though sometimes I would hide my real feelings even from him.
In the years following I reduced my sugar intake (I was a sugar fiend for years), I cut out as much dairy as I could, I cut out red meat and took fish oil and magnesium supplements. I was also using natural cleaning and body products and had stopped painting my nails. I stopped using perfume and was using period undies and liners instead of tampons. My periods definitely improved with the occasional one that would cause me a bit of grief, but instead of constipation sometimes I was getting diarrhoea with my period. I guessed that was because of the Endometriosis they had left on my bowels.
Endometriosis had taken my fertility away but it also introduced me to a whole world of other women, and we were all struggling with Endometriosis and infertility.
I felt lucky in a way as my symptoms were not as extreme as others. I wasn't passing out or vomiting because of the pain and I wasn't taking time off work. My relationships weren't strained and I could still function day to day. I became more mindful of what others were going through because I was going through it too.
Through my work as a Pharmacist I have counseled many buying pain relief for their period pain, and I am surprised at just how many people put up with their pain because they too, thought it ‘was normal’. I referred so many to their doctors and I hope they got the right care and weren't dismissed like so many are. I was 31 when I was diagnosed and maybe if all the doctors I had seen over the years had had asked more questions, I may have found out about my condition sooner.
Last year, the 4th of November 2020 was the day I found out I was eight weeks pregnant with twins, and also the same day I lost them... I held the ‘product’ in my hand and was amazed and shocked that it had even happened. It wasn't until later that day the magnitude of our loss finally sunk in. My partner and I discussed it, and I cried.
We remained hopeful it would happen again.
The miscarriage was one of the most painful things I have ever experienced. The blood loss and the contractions were unexpected, but luckily my body had passed everything without needing a dilation and curettage. Afterwards my periods were so heavy and painful; I was getting them as early as twenty-four days! Eventually after about four months they started to settle. I made an appointment with a new doctor at a women's health clinic a few weeks after my loss and she confirmed everything at our consultation with blood tests.
Sometimes it felt like a dream. My blood test still showed I was still pregnant weeks after, which she said “…This was expected with twins, as the HCG (Human Chorionic Gonadotropin Hormone) levels take longer to go down.” She is the most beautiful and caring doctor and I was lucky to find her. A few months later I had a pelvic and vaginal ultrasound to see how everything was looking, that way she would know what was going on and how she could then look after me. A fibroid was picked up, but everything else was looking good and we just had to wait for the ‘magic to happen’.
It was hard to get back on that bandwagon but my partner and I just had sex whenever, we didn't actively try. I was back to being hopeful but I was also realistic that it may never happen again.
At 37 on the 6th of June 2021, I pee'd on two different brands of pregnancy tests. I got the darkest positive line immediately! I showed my partner and just cried. I cried because I had never seen a positive test and I cried because I didn't want to have another miscarriage. I had spotting at six weeks and a light bleed at nine weeks (due to a haematoma) but thankfully so far so good - and I am now seventeen weeks pregnant. It absolutely blows my mind that after seven years, I am finally pregnant with a miracle.
I am super grateful that it has even happened naturally. I know it's still early days, and it wasn't until I was at the twelve weeks that I finally started to relax and believe I was having a rainbow baby. I'm amazed at how my body has already changed and I'm staying positive for a healthy pregnancy. Also, if I am being completely honest I am also enjoying the whole ‘no period’ thing…
This Blog has been written for QENDO and shared with consent.
This blog does not constitute medical advice and is a personal story by someone living with pelvic pain conditions. The medications, supplements, health providers mentioned in this blog are not endorsed by QENDO nor does QENDO receive financial incentive for these products or by the medical professionals mentioned. Please consult with your health care team before considering taking any supplement, medication or treatment pathway.
The materials available on or through the website qendo.org.au [‘QENDO’] are an information source only. Information provided by QENDO does not constitute medical advice and should not be relied upon to diagnose or treat any medical condition. To the maximum extent permitted by law, all contributors of QENDO make no statement, representation, or warranty about the quality, accuracy, context, completeness, availability or suitability for any purpose of, and you should not rely on, any materials available on or through the website qendo.org.au. QENDO disclaims, to the maximum extent permitted by law, all responsibility and all liability (including without limitation, liability in negligence) for all expenses, losses, damages and costs you or any other person might incur for any reason including as a result of the materials available on or through this website being in any way inaccurate, out of context, incomplete, unavailable, not up to date or unsuitable for any purpose.
