My debilitating endometriosis symptoms – Kate’s story

Hi, I’m Kate, 39, married with no children. I had always suffered from heavy and painful periods but this had mostly been managed by taking the combined pill. My periods remained heavy and I suffered from some flooding but this was manageable with planning! Approximately 7 years ago my periods became worse and I started to experience more symptoms such as regular and frequent abdominal pain, random bleeding, bloating, very painful intercourse and things just didn’t feel right.

Anyway, I went to the Dr’s who straight away suggested that it sounded like I had endometriosis and referred me to a consultant. After initial investigations such as scans, I was booked in for a laparoscopy. The results of which were that I did indeed have endometriosis and a number of adhesion’s were removed. I was signed off from work for 2 weeks and got back to life, back on the combined pill adhesion’s and things seemed to be resolved.

I got married in September 2013 and in October 2015 we decided to try for a baby so I came off the pill. I’d been told that it may be difficult to conceive due to the endometriosis but I was fit and healthy so all signs were good. However after 4 months of the endometriosis symptoms re-emerging and lots of conversations we decided that having children wasn’t really for us (I can assure you that the endometriosis symptoms weren’t just the cause of this) so I went back on the pill. Unfortunately, the endometriosis symptoms were back with a vengeance so I went back to the GP, was referred back to a consultant and my second Laparoscopy was in June 2016. They found more adhesion’s and previous scarring which were all removed. Again I was back at work 2 weeks after surgery.

Postoperatively I went back to my GP for a repeat prescription on the combined pill. However things didn’t go to plan and as we were going through the usual questions before the prescription is completed, we came onto the topic of migraines. Now I am and always have been a migraine sufferer always and I get migraines with aura so shouldn’t really be on the combined pill due to the significantly increased risk of stroke for people who suffer from these type of migraines. In the past, I have accepted this risk as the combined pill has successfully managed and maintained my Endometriosis symptoms. Unfortunately due to increased guidance, my GP couldn’t prescribe the combined pill so I went onto the mini pill (even though when I’d had this in the past I bled constantly and I didn’t get on with it). As I had feared I didn’t react well with the mini pill and actually had 2 weeks of the most severe migraines I’ve ever had, to the point that I thought I had actually had a stroke! I went back to the GP who said it looked like hormonal management of the Endometriosis could prove challenging and she mentioned other options including the possibility of a hysterectomy; I nearly fell off my chair! Anyway, in the immediate term, i was advised to come off the pill completely and to discuss further with my consultant – I had my monthly post-operative consultation with him booked in the following week. This was September 2016.

My consultant was excellent, very matter of fact but I respond well to that so was happy to discuss actually l options. We did discuss other things such as the coil or injections but due to my reaction to the mini pill and the fact that I didn’t relish the thought of further surgery in a few years time we went down the more permanent road…

Initially, the plan was to remove my ovaries so I started 3 months worth of Zoladex injections. These placed my ovaries into a dormant state; basically mimicking the removal of my varies and therefore starting the menopause, to see how I responded.

I had the Zoladex injections with the consultant and it was on my second visit that we decided didn’t is cussed the total hysterectomy. We reviewed my previous surgery together, looking at pictures of the scarring and discussing my ongoing symptoms and he said that due to the location of my adhesion’s etc, I was a prime candidate for a hysterectomy. However, due to my migraines and my reactions to the mini pill, HRT wouldn’t be an option for the management of menopausal symptoms.

As you can imagine all of this was quite a lot to take in; major surgery, the fact that even though we’d made the decision not to have kids, it would now no longer be our decision and of course the menopause before I was 40! I did a lot of research on NHS websites etc, discussed it with my husband, close friends and family and my husband and I agreed it was the best decision for us. So on my final injection in early Jan 2017 I confirmed to my consultant that we’d go ahead with the hysterectomy and he booked a total laparoscopic hysterectomy with bilateral salpingo-oophorectomy for Feb 13th.

I am seeing my consultant as an NHS patient using private facilities hence the speed of treatment. I had my pre-op and was booked in for 3-night stay with my op on 13th Feb. I went in as an afternoon admission and went down for surgery at about 6 pm. The operation was carried out laparoscopically with my cervix being removed vaginally and it went well. I was back in my room at about 9 pm. I was on Codeine, Paracetamol, high dosage Ibuprofen and Oramorph (liquid morphine). I had vaginal packing and a catheter. I ‘slept’ on and off on the Monday night. Unfortunately, I wasn’t very well on the Tuesday with bladder retention when they removed the catheter so it had to be put back in, fainting and very high temperature. Luckily this was all resolved by the Wednesday and after having a wee, a shower and walking with the physio, I was discharged home.

I’ve now been home for 2 weeks and I feel good. I was discharged with Codeine, Paracetamol and ibuprofen and took them as needed. I actually stopped taking the painkillers last week. I am still bleeding though but this has reduced so its fine. My husband was home with me for the first few days which really helped. I was sleepy but not in too much discomfort considering the surgery and very glad to be home. I’ve become stronger each day and ensured that I moved about as much as possible. I’m not one for sitting down and when I’m fit and well, train at least 5x a week so sitting on my butt is a struggle (I can’t wait to get back to this!!). However, it is what is needed. Just having a shower in the first week would exhaust me so I went and lay back on my bed with a book. I am now walking between 2-3 miles a day and resting when needed. I am signed off work for 4 weeks currently and am seeing my consultant on 10th March and am hopeful that I can go back to work; maybe from home or slightly shorter hours for the first couple of weeks.

I’ve found keeping myself occupied at home without being able to go to the gym quite challenging, but I’ve read a lot, had friends around for coffee, made an appointment to have my hair highlighted, blitzed some household paperwork etc. I have also accepted that I need to listen to my body and rest when needed. My consultant said that this would indeed his biggest challenge with me and he was right!

As for the menopausal symptoms, I’m now used to these as they started as soon as I started the Zoladex injections so it’s 5 months now. The only things I’m suffering from are the hot flushes during the day (just have to accept this and wear layers!) And night sweats and insomnia. These latter symptoms are more of a struggle but I’m not allowing myself to get stressed about it and am taking herbal sleeping aids and having the windows open. It can’t last forever!

So why am I writing this you may ask. Well, I wanted to put a positive spin on this. Having a hysterectomy is a big decision for anyone and it can seem very daunting, in fact, the reactions I had from friends, family and colleagues were always that of shock and sympathy. Yes, it is major surgery BUT it really isn’t as bad as you build it up to be. This is one of the most common surgeries that can be carried out and although it’s a massive thing for the patient, it’s par for the course for the surgeon and they know what they are doing; it pays to put your trust in them.

I also wanted to share some hints and tips…

Back some tasty treats in your hospital bag – squash, fruit, peppermint tea, choccy!
Take some baby wipes or equivalent with you to the hospital – it’s nice to wipe yourself down.
There are some great adult Dot to Dot, colouring and puzzle booked out there – they are good fun.
Get some magazines.
Top up on your books and box sets for when you get home.
Before you go into hospital, do some food prep work so you and your family don’t have to think about that kind of thing for the first few days.
Be honest with yourself and others; if you need to rest or sleep – do it!
Don’t dwell on the negatives, focus on the positives – plan a holiday for example.
Keep healthy; eat lots of fruit and veg.
Enjoy the break! This sounds silly, but there are few occasions as an adult where you get the opportunity to take things easy. OK, the circumstances aren’t ideal but the result is the same – sit back, relax and let people help.

Anyway, I hope this has been helpful and I wish anyone going through this a speedy recovery and a cheery, symptom-free future.

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