My life leading to hysterectomy – Lucy’s story

So I’ve decided to write about my ‘journey’….. I hate how that sounds!!….OK I’ll call it my experiences. Now I’m happy I’ve renamed it my ‘experiences’ I can start this.

I am 38 years old, 23 years ago I was told I have PCOS (polycystic ovarian syndrome). This was following 3 years of erratic, heavy, painful, periods. I was prescribed the combination pill to regulate my cycle and told if I wanted babies I’d likely need fertility treatment.

Fast forward a couple of years…… I was still suffering heavy painful periods, only now they were regular! I made the decision to stop taking the pill and as I was told I was unlikely to conceive naturally, my boyfriend (of 2 years) and I did not bother using contraception. A year later I proved the infertility theory wrong and discovered I was 8 weeks pregnant. This was a happy/terrifying time as I was only 18 and still living with my parents!

The beginning of my pregnancy was difficult, a few days after discovering I was pregnant I bled heavily and was rushed to hospital. When I was scanned and told I had had a miscarriage. I had to return to the hospital a week later for a follow up scan to ensure I had passed all the ‘product of pregnancy’. During that scan they discovered there was in fact a healthy foetus with a tiny blinking heart! It seemed I had been pregnant with twins! I was closely monitored for the rest of my pregnancy and gave birth to a healthy baby boy, who was and continues to be the light of my life.

The heavy, erratic, painful periods returned immediately after having my baby, I tried several different oral contraceptives, the depo injection and natural remedies…….none of which helped. Life continued regardless of the pain and bleeding, I separated from my little boy’s father, met someone, moved to Essex, had abnormal cervical smears, colposcopy, loop excision and informed I had a successful total removal of CIN 3 cells in my cervix, moved back to Lincoln, got married, held down a job as a retail area manager, then Just over 5 years after having my son I discovered I was expecting again…I was overjoyed. Another difficult pregnancy ensued though for different reasons than the first. At 26 weeks it was discovered that my placenta wasn’t working correctly and my baby was getting limited blood flow….a very worrying time but I had an amazing team looking after the two of us and although I spent most of the rest of my pregnancy in hospital, I went to term and had a healthy baby boy…the second light of my life.

Again the pain and bleeding returned! My GP and I decided the next treatment to try was the contraceptive implant. For a whole year it was wonderful and I felt great! But then slowly but surely the pain and bleeding returned, I was told I could try the oral contraceptive on top of the implant but this didn’t help either. There was only two things my GP was then willing to offer me, one was the coil….. I considered this and read up on it and decided it wasn’t for me…..too many scary stories! And the other was a psychologist referral! Yes you read correctly, my GP thought it was all in my head and actually used the words “you are fat and depressed”.

So my only option was to go it alone, suffer in Silence, be grateful I have two children even though I have PCOS and hope for early menopause.

Fast forward to last October (2015), been divorced for 9 years, seeing a guy for 1 year, mother to an 18 year old and a 12 year old, trained as nurse for 3 years and qualified for 3 years, working full time in A&E………still suffering!!!
Daily I was taking mefenaic acid, co-codamol, ibuprofen, prochloraperazine and tranexamic acid….. I rattled!!!

Then I got an acute pain in my lower left pelvic region that totally floored me, My GP referred me for a scan and it was thought I had a large cyst growing on my left ovary. Though the scan did not reveal a cyst, what it did show was abnormalities in the lining of my womb and my left ovary was difficult to view, my bloods were taken and my ca125 levels were raised (tumour markers!) I was put on a two week wait for a Gynaecologist consultation…..being a nurse I knew what that meant….scary time! I saw the consultant who ordered a hysteroscopy. Biopsies were taken, this was the most excruciatingly painful test I have ever had! Luckily the results came back clear of Cancer which was amazing but I was still in more pain than normal. I was rebooked to see the consultant again in 3 months.
One morning during this time I was 11 hours into a 13 hour night shift when again I was hit by increased pain, it got worse and worse until I could no longer stand up, my colleagues were amazing, booked me in, put me in a cubicle and gave me pain relief…… They thought I was having an ovarian torsion. Several days in hospital, numerous tests and scans all came back inconclusive. Tramadol, diclofenac and oramorph was added to my daily drug regime.

At my second consultant appointment I was again offered the coil, which I again declined. The consultant then suggested it could be endometriosis and due to the pain being mainly left sided and the left ovary being difficult to be seen on the scan when it had been easily viewed on previous scans. She suggested that the endometriosis could be fusing my ovary to my bowel, abdominal wall or uterus. I was prescribed a 6 month course of zoladex implants to stop my natural hormones, putting me into a chemical menopause and see if the pain improved.
At this point I was willing to try anything!

3 months into my treatment on Zoladex, the pain began to ease and I began to be me again, it felt like a miracle. My sons had their mum back and my partner had his girlfriend back. I could do all the things I used to do, days out didn’t exhaust me, holidays were booked, smiles replaced tears and the only pain medication I needed was paracetamol and the occasional diclofenac.

5 months into my 6 month course of treatment I was back to see the consultant, I was terrified that the Zoladex would stop and the pain would return….I knew I was only allowed to be on the Zoladex for 6 months.

I explained to my consultant the difference the Zoladex had made to my life and it was decided the next step would be a total abdominal hysterectomy and bilateral salpingo-oophorectomy, now don’t get me wrong we did a lot of talking on the matter it wasn’t a 5 minute appointment….but I won’t bore you on details. It was also decided I can continue the Zoladex up to my hysterectomy (the 6 month limit is in place as the chemical menopause is irreversible if taken longer than 6 months…..this now is not an issue for me). The waiting list is about 12 weeks…..this was 4 weeks ago and brings my timeline to now (August 2016) I am apprehensive about the operation, the recovery, the impact on my life, family, work. I’m completely grateful to my children that are so chilled out about what’s going on and my boyfriend who has supported me and held my hand through every appointment, test and sleepless night…..with my 3 men I know I can face and get through anything

Onwards and upwards to pain free life!!!