My own Endo symptoms began when I was in my early teens but I didn’t get properly diagnosed until I was aged 28.
TW: MISCARRIAGE & SURGERY
What Is Endometriosis?
Endometriosis is a debilitating condition that affects people who are assigned female at birth. It is when tissues resembling those found inside the lining of the uterus grow elsewhere in the body, usually inside the pelvic areas attaching to abdominal organs and similar tissue structures.
To find out more about what endometriosis is, click here to read our comprehensive article!
Do I Just Have a Low Pain Tolerance?
Many women, myself included, have been made to think we have low pain thresholds and are just having bad periods when in reality a lot of us with Endometriosis have the complete opposite.
A lot of GP’s are not fully up to date with the symptoms list for Endometriosis and need to be better informed in my opinion. It is not just simply having painful periods with heavy bleeding.
It can also manifest with a huge list of symptoms affecting every part of someone’s life.
Does Endo Run In the Family?
Endometriosis runs in my family, but despite bringing that up with my GP I was told (back in 2014) the likelihood that I had it too would be slim (even though I had a ton of symptoms matching its description).
Endo is not thought to be hereditary; however you are 2 to 3 times more likely to have Endo if a close relative has it. I knew after being married for a couple of years I wanted to try for a baby, I put all doubt out of my mind and talked with my GP and they assured me I was young and healthy (after a general MOT at the Doctors). They gave me advice about my heavy periods and I made some lifestyle and diet changes.
The Beginning of My Journey
I first began trying for a baby at the age of 25. I had been on a contraceptive pill for the past six years, which I started when my GP told me it would help with my debilitating painful and heavy periods.
After only a couple of months off the pill, I was back to suffering every month with heavy bleeding and irregular periods, which made tracking my cycle difficult. I tried everything, including overhauling my diet and lifestyle and taking conception vitamins, I even tried ovulation sticks for six months straight. Nothing was working for me, so after enduring this for almost two years I went back to my GP.
My GP did a series of tests including an ultrasound where I was diagnosed with an ovarian cyst. I was told this was unlikely to stop me from getting pregnant and would go away on its own. I also had blood tests across the course of one of my menstrual cycles to test if my hormone levels were normal, and luckily for me, they were.
I was checked for deficiency in minerals and all sorts of things such as iron and all my tests came back as normal for my age range. By this time I had just turned 27 years old and was told by my Doctor I was fit and healthy. Try more frequent sex they told me, usually every forty-eight hours the week of ovulation.
Despite all of this I still didn’t get pregnant, and my monthly symptoms that now included painful bowel movements, heavy bleeding that left me feeling faint and pain that induced vomiting left me exhausted every single period.
I had to take time off work; I was anaemic and kept feeling like I could fall asleep at any moment. I began getting regular headaches and sharp pains even when I wasn’t on my period. I felt poorly all the time, which made trying for a baby even harder. Intercourse was getting more painful too, to the point where I was waiting every time for it to be over with, pain during and afterwards and sometimes bleeding afterwards too. I endured every time just in the hope of becoming pregnant.
I Ended up in A&E
A month later I ended up in Accident and Emergency, this happened a total of seven times during this third year following on from these tests I had, three times were because I fainted and vomited due to the high pain levels I was experiencing, three times due to severe blood loss causing me to need IV fluids and pain killers, and one admission was due to my ovarian cyst rupturing during one particularly painful periods and causing a bad infection.
I collapsed at home unable to stand, requiring a three-night stay in hospital on IV antibiotics and strong pain relief. After a scan, I was told my cyst had ruptured but it was still showing up on my scans. I talked to a gynaecologist doctor on the ward about getting pregnant while I was there that visit, and she told me to try more often.
Despite me explaining at length all my symptoms and discussing how my periods had plagued me ever since I was a teenager, she was very quick to dismiss me. I mentioned Endometriosis and how my Aunt had it too, but she shrugged me off.
I explained how I felt poorly all the time and I kept ending up in hospital and she just suggested that I simply try harder to become pregnant. I felt like I was being fobbed off, like I was a hypochondriac and that my pain was in my head, but I was doing everything that I could to become a mother, and nothing was working. I went home the following day feeling deflated but determined.
I Did Everything I Could To Be Healthy
After I had recovered from my burst cyst and finished my antibiotics I did my best to have an extra healthy month, including eating a rainbow of fruits and vegetables, drinking only water or homemade smoothies and keeping up with my vitamin supplements. I got more sleep when I wasn’t working and generally looked after myself.
And to my amazement, a miracle happened during this month, I finally got pregnant, and of course, I was over the moon. I was elated for a week after I did the test, I spoke to my GP and got assigned a midwife, and I couldn’t wipe the smile off my face... That was until I had sudden pain and started bleeding at six and a half weeks, and at what should have been the start of week seven… I had my miscarriage confirmed.
I was devastated.
At the early pregnancy unit, they were so kind and gentle, but it didn’t stop the feelings I was having. I felt guilty despite being told it wasn’t down to anything that I did, and I was still no closer to becoming a mother, yet again. I was told to wait until I had had an entirely fresh cycle and then we could try again the following month. One in four pregnancies ends in miscarriage, but for those with Endometriosis, this figure is more like one in three.
I Was Finally Diagnosed
After my post miscarriage bleeding I had one relatively normal period before I was once again crippled by pain with my next one. I collapsed at home yet again, vomiting and bleeding heavily, but this time it was so bad I ended up in the hospital on the surgical assessment ward.
After a few days of being nil-by-mouth on pain killers, them giving me antibiotics and pushing fluids I was finally taken in for an emergency abdominal laparoscopy in the hope of diagnosing my problem. Earlier that day I told the Doctor on the ward I couldn’t take the pain any longer, it wasn’t getting better this time and was now constant.
I was terrified as they wheeled me away for surgery, not knowing what they might find. While I was under anaesthetic they discovered I had Stage 4 Endometriosis. When I came around and they told me I finally felt a weight lift off my shoulders because my fertility problems were real. I had mentioned Endo before and been dismissed by Doctors, but I was right all along. Sadly the diagnosis was only the start of my journey however and I had a long road ahead of me.
Endometriosis has 4 main stages. Stage 1: Minimal, Stage 2: Mild, Stage 3: Moderate, Stage 4: Severe. When a woman reaches Stage 5: Surgery for a Full Hysterectomy is advised.
My emergency surgery was purely diagnostic-related, so nothing could actually be done without an appropriate team. They took pictures and video of my insides, showing the damage and giving a good view for the gynae team to follow up with.
Afterwards I was stitched up and put on the waiting list for the local Endometriosis gynaecology consultant and his team. I waited twelve weeks, on strong pain killers and a specific type of birth control to stop my periods; I had daily agony while I waited to have my next procedure.
When that day finally rolled around I talked in depth with the team, who assured me they would do what they could to save my organs. But I was looking at a bowel resection, abdominal lesion and adhesion removal, bladder and uterus clean up and the removal of deep infiltrating Endo that had spread through the vast majority of my pelvic region. My left ovary was compromised by a chocolate cyst the size of a tennis ball (also known as an Endometrioma), and all my organs were pulled over to one side of my abdomen in a mesh of Endometriosis tissue.
This is why I had been in so much pain for such a long time. It was also likely why I didn’t stay pregnant the two months previous, because my abdominal organs were so messed up by the Endo growths. It was a lot to take in, but I was adamant I would do anything to get better and have that second chance of having a baby one day.
I Told Him I Didn't Want a Hysterectomy
I expressed my wishes about becoming a mother to my consultant, and I was not consenting to a full hysterectomy right there aged (by this point only four weeks off becoming) twenty eight. I was told age would go in my favour regarding my recovery time, but it would be months of healing inside before I could try again. They would do what they could to save my reproductive organs, but I should prepare myself in case their worst fears were realised, with one compromised ovary it didn’t look good.
Incredibly when I came around from my procedure my consultant told me he had managed to fix me up and even save my left ovary. He also did a tube dye test post-surgery while I was still under anaesthetic and ensured me my tubes were free from any Endometriosis. The bowel resection went well but I would need another in the future because it was deeply infiltrated. He suggested that if I wasn’t pregnant within a year he would refer me over to the nearest IVF clinic to begin treatment with them.
I Started IVF Treatment
After a gruelling set of forms and various tests including ultrasounds bloods and family history, I was finally accepted into the clinic to start IVF treatment. Under no illusion that it might not even work, I didn’t get my hopes up. With my Endometriosis being so severe it gave us a 33% chance of success at getting any eggs from me, provided I was able to produce mature eggs at all.
The drugs used in IVF do exasperate the condition of Endometriosis, so it’s important that steps are taken so that you can manage any pain and discomfort at home without compromising the IVF treatment and the drugs. The years of pain I had endured before surgery, and the monthly periods I still had put up with gave me a high pain tolerance, so I didn’t find it all that bad. However, paired with my fatigue it was an exhausting time for me.
I had my embryo transfer a few days after egg collection and I waited patiently until I could do the pregnancy test. I took time off work and rested at home, taking care of myself with gentle walks every afternoon, drinking plenty of water, eating healthy food and nothing processed. I took my folic acid and I kept up with my medication from the clinic. After the two week wait I tested and I couldn’t believe my eyes when the two lines came up, I was pregnant again. But after a few minutes of elation, all I could think about was what could go wrong. I worried every minute that I was awake, and every twinge just made me worry more.
I Was Pregnant Again!
When someone who has Endometriosis gets pregnant they are more likely to have bleeding during their pregnancy, there are several reasons for this, but pockets of blood can occur along the lining of the uterus which can burst and leak when the uterus expands during pregnancy.
This is what happened to me. I had three big sudden bleeds between six and fourteen weeks of being pregnant. Every single time it happened I worried I was miscarrying again, but my little baby was strong and hung in there for me. At every scan and every check-up I felt like the luckiest mother to be, and I talked to my bump every day asking my baby to please stay put. Some of my Endometriosis symptoms became less as the weeks rolled on and my hormones took over, which was a great relief.
As my pregnancy weeks passed by I found myself so grateful, and I couldn’t wait to meet my baby. Something that usually occurs in women with Endometriosis is that they don’t tend to go full-term. I was also scanned and checked over at 36 weeks, baby was head down and everything looked good. I am only a small woman, so we knew my baby wasn’t going to be huge, he was measuring well, but he was already head down and engaged. They wanted to induce me at 38 weeks if I didn’t go into labour in the meantime. I had been consultant lead the entire way of my pregnancy, due to being high risk, and it meant extra appointments, scans and blood tests but it was all worth it.
I Gave Birth Naturally
I felt off at 37 weeks and two days in, and was checked over at the labour unit. They told me to come back on Thursday morning because I was already having light contractions – I thought they were just Braxton Hicks! When I went back to the hospital late morning on the Thursday I was already three centimetres dilated and they could see baby had lots of hair. The ward sister broke my waters and my labour was kick started – no need for the induction at all! Thank goodness!
I gave birth to my son naturally in the early hours of the following day, less than twelve hours after having my waters broken. I did require stitches for a second degree tear, but after having two lots of abdominal surgery and the IVF that sort of thing no longer bothered me. I was so ecstatic to finally have my baby, he was delivered safely and he was heathy, that was all I cared about. And my post-birth bleeding was just like a normal endo period for me, so I coped like a Queen!
My Advice To Other Mums With Endo
The reality of trying for a baby when you have Endometriosis is this; it is never going to be easy.
Some women will find it easier than others; some may struggle so much they require additional support and treatment such as going down the IVF route. Nothing is certain, but if you are determined and you listen to all of your specialist’s advice, hopefully one day you will be able to experience the joys of being pregnant. If not there are other ways to become a parent, discuss these with your Doctor.
If you or someone you know is struggling with infertility or baby loss then please reach out and speak to a GP, Gynaecologist or Fertility Expert. The Endometriosis UK website also has wonderful advice and support. There is also Fertility Network UK and Tommy’s who help with miscarriage.
As a woman who suffers daily with Endometriosis, I will say this, not giving up on becoming a mother was hard but it was also the best decision I ever made in my life. I am so proud of how far I came and how hard I had to fight.
My son is my whole world; I am eternally grateful to my Endometriosis specialist and his team who gave me my life back in 2015/16, and who are continually supporting me during this difficult stage of my life.
