MPs will debate decommissioning IVF on the NHS- I’ve had my say, now it’s your turn!

On Thursday 19th January 2017, MPs will be debating whether IVF should continue to be provided by the NHS.

While this is a good opportunity to highlight the plight of those experiencing infertility and to highlight some of the injustices that exist around accessing fertility treatment (e.g. the postcode lottery) I find it incredibly frustrating that such a vital service could be removed from the NHS in the near future.

A Facebook group has been set up by MP Steve McCabe for the public to express their views on this matter, which you can access via this link. I strongly encourage those of you living in the UK to contribute to this if you feel able to, whether you have been directly affected by infertility or not. (A word to the wise though- LOADS of my Facebook friends ‘liked’ my post, so it’s not the most private method of airing your views on this topic!)


One day I will snap.

Personally, I’m so angry about this! Women with endometriosis are high users of IVF, since the disease is one of the leading causes of infertility in women, and so as a community we stand to loose so much if these services are decommissioned. This breaks my heart as I feel that we endosisters have suffered enough already and do not need or deserve the added stress of being unable to access fertility help.

As some of you may also know, 2017 is the year that I am hoping to access fertility treatment, so WHY THE HELL IS IT GOING TO BE DECOMMISSIONED NOW?! I’m not the type to be prone towards paranoia but it does feel a little bit like the world hates me.

There are also some sinister undertones to this debate that I think are really ugly. Like  how infertility is only the result of ‘lifestyle choices’ and that it’s just tough luck to those that experience it. We need to challenge such thinking NOW, because if IVF is decommissioned on the NHS it’s very unlikely that it will be reinstated.

I uploaded the following comment to the Facebook page:

I could have written more, but I started loosing the will to live to be honest with you. I am sure this will turn out to be a frivolous exercise, but it still feels good to publicly air my frustrations and contribute in my own small way to the debate.

I have also emailed my local MP Sir Oliver Heald to ask for his support in this matter, but looking at his profile (rich, white Conservative, old) and his voting record I’m not going to hold my breath that he is going to be a champion of women’s (health) rights. I would certainly encourage you all to contact your own MPs ASAP too though.

What are your thoughts on this matter? Do you think IVF should be covered fully or partially by the NHS, or do you think it is a luxury that should be funded privately? How will it affect you if this service was taken away? I’m also interested to hear from all you endosisters outside of the UK about your experiences of accessing and funding fertility treatment.

Take care all, I know this is an emotive subject and I only wish luck and happiness to each of you.


What’s it like to have a laparoscopy for endometriosis?

During the six weeks or so that I was waiting for my laparoscopy to remove my ovarian cyst and confirm my suspected endometriosis I was literally terrified every day. I had never had any surgery before, and even trips to the dentist make me feel anxious. A lot of crying was done.

Having asked around my family and friends it quickly became clear that nobody I know has ever had a laparoscopy or knows what one is. As pleased as I am about that, I knew that I was very much on my own with this. So, as all twenty-somethings naturally do in my situation, I turned to Google, even though I know this is often a TERRIBLE idea for health related matters. I have had internet search related health meltdowns more times than I care to admit. I once thought I had SARS. Seriously.

So anyway, after lots of searching about what a laparoscopy would be like, I came away disappointed that I was still little better informed than when I started. There doesn’t seem to me to be much written about the procedure in it’s own right, it is usually a minor footnote in people’s wider experiences of gaining an endometriosis diagnosis. I read a lot of forum posts, and these were often horrifying worst case scenarios- or at least, that’s what I had to tell myself that or I’d never have gone through with the surgery. An additional problem was that most of the sites I came across were American, which were helpful to a point, but I know that processes and things can be quite different in the NHS.

I decided that once I was through the laparoscopy, I would write a post about what it was like, to help women in the UK better understand what to expect- before, during, and afterwards. I know that everyone’s experience is unique but I think it is probably helpful for more of us to lay this on the table to demystify the process and help remove the fear. Remember- Knowledge really is power! 😀 I have written this post in Q&A form to address the questions that I felt were important leading up to my laparoscopy, and also what friends and family wanted to know.

Q: How were you prepared for surgery when you arrived at the hospital?

A: When I arrived to hospital (at 7am- that seemed insanely early at the time!) I was quickly seen by a nurse who took my blood pressure, and weight etc. She was very friendly, and I felt able to confide some of my worries to her. She did her best to reassure me, and went to get the anesthetist. He and I had a long chat about what would happen during the surgery- and I think knowing this in detail helped to relax me a lot. After this, I had a short meeting with my surgeon/consultant, where I had the opportunity to ask any final questions. Then I was whisked away, changed into my very flattering and beautiful surgical gear, and was walked over the the operating theater. I remember chatting to a few of the surgical team about the ska band ‘The Specials’ and then shortly afterwards I was asleep! It all went by so quickly, and actually, after weeks of worry I felt very calm on the day as everyone was so supportive and reassuring.

Q: What were your biggest worries about the procedure?

A: These types of worries are very personal. For me, it was mainly the possibility of the anesthetic not working, pain after my surgery, and the risk of having to have a bigger cut made (a laparotomy) if something went wrong. I discussed these worries with my nurse and anesthetist, and I am so glad that I did, even though I felt really daft, because they were excellent at tackling each of my worries and explaining what they would do to manage each of them. My anesthetist actually gave me a really impressive talk on ‘awareness’ during surgery, and why it wouldn’t happen to me, that was very moving both visually and emotionally- I assume he wanted to be an actor but his parents had pressured him to going to medical school.

Q: What was having a general anesthetic like?

A: Quite a surreal experience, but not a horrible one at all. I’d already been given a sedative at this point- presumably because I was ‘quite anxious’- so it was actually quite difficult to stay awake anyway. From my general experiences in hospitals over the past few years, I always recommend taking the sedation if it’s on offer- it is your friend. The anesthetist told me he was putting the anesthetic into the drip he had placed into my hand, and so to open my eyes, and that was the last thing I remember. It wasn’t a general drift to sleep- I was out like a light. After the surgery, I don’t think I had any bad side effects from the anesthetic- such a nausea. However, I was quite drowsy for a couple of days.

Q: How long did the procedure take?

A: From walking over to the operating theater to waking up in the recovery area took three hours.  For me, it felt like three minutes really, but my parents said it felt like three days as they waited in the hospital coffee shop. Time is relative in these matters I think. My surgical team had initially thought my operation would take half that time, but they hadn’t expected to find such widespread endometriosis inside me, and spend a long time documenting and photographing it on my various organs.

Q: How did you feel when you woke up?

A: Very calm. When I first woke up, I felt like I was gently waking up from a good nights sleep. I felt positively sprightly! After a couple of seconds I remembered where I was, and looked around to see a nurse sitting beside me. We had quite a nice chat for 10 minutes, and she assured me that my operation had gone well and that they hadn’t needed to remove my right ovary. She also gave me some oxygen through a tube which went up my nose. Over the 10 minutes, I began to become aware of some pain in my abdomen. If I had to describe it, I would say it was a combination of a muscular ache (similar to the feeling after you’ve done too many sit-ups), and a sharper more stabbing pain where the incisions had been made. I was offered morphine, but said I was happy to try paracetamol and ibuprofen and see how things go. I actually managed fine with that level of pain relief throughout my entire recovery.

Q: What happened during your hospital recovery period?

A: Not much really, once I was wheeled over to the recovery ward. I was mainly just left to rest and chat to my mum and dad. I was on a slight euphoric high I think because I was so pleased that I had got through the surgery OK. I was given some tea and toast, which I really didn’t fancy, but when I started with them they were the best thing ever. Honestly, I think it was miracle toast, because after I had finished it I felt so much better and in less pain. Hurray for toast and the nurses who make it for us! I also needed to go to the loo quite a few times, which I found slightly odd since I was so dehydrated. Mum mum helped me hobble to the bathroom- but it wasn’t really painful, just slightly uncomfortable. They make you check there is no blood in it, as this can indicate problems from the surgery, but mine was all fine.

Q: How were you given your results?

A: After being awake for about an hour, my consultant/ surgeon came to talk to me and my mum. I thought she did a good job of explaining the findings of my surgery in a simple way that I could understand. She also showed me some photographs of my insides which was actually quite cool, although really surreal. I thought my mum was going to faint though when she saw the photos- she is very squeamish.

Q: When were you able to go home?

A: I went home at 3pm, with the help of my parents, around 3 hours after waking up. I was actually quite lively and was able to move around fine. I had dreaded the car journey back home, but that was actually fine too! Just be very wary of where you are placing your seat belt, and maybe take a cushion to help with this.

In your drug addled state, never EVER think it is a good idea to take a post-op selfie. The results will be hideous!

In your drug addled state, never EVER think it is a good idea to take a post-op selfie. The results will be hideous!

Q: How was your post-op recovery?

A: Much easier than I’d anticipated. I’d say I was quite sore for about four days, and after that felt OK, just tireder than usual. I used it as a good excuse to be waited on by my partner and parents! 🙂 I was back to my hardcore boot-camp exercise classes 3 weeks later- which shows how quick your recovery can be.  Emotionally, recovery has been a little bit harder. I was initially ecstatic that I had (finally) received a diagnosis that could explain my symptoms, but after about a week the full implications of having endometriosis began to sink in. I’d definitely recommend talking to friends/ family as much as possible during this time. I bottled it up- and I think it set back my recovery in some respects.

Q: Do you have any tips on aiding recovery?

A:There are a few things I wish I’d know about recovering from a laparoscopy, and here they are:

(1) When you meet with your surgeon after your surgery, have somebody write down what was found- because it is quite hard to remember the details in the coming days/ weeks once the anesthetic has worn off. This information will be useful in working out your aftercare and for visits to your GP.

(2) Rest, rest, rest. Websites, and probably your doctor, seem to make out like you will bounce back from a laparoscopy after a few days. In reality, I found it was about 5 weeks until I was completely back to normal.

(3) Involve friends and family as much as you can, by keeping them updated and letting them keep you company. Trust me, you don’t want to go through this alone.

Q: What are your scars like?

A: Not too bad- they are actually surprisingly tiny. Three months on, my navel looks pretty much back to normal!  They were itchy for a couple of days the week of my surgery, but have been no bother since.

Q: How has your follow up care been?

A: I have been discharged to the care of my GP, who is a lovely and understanding lady. Although I was recommended the Mirena coil, I have decided not to go ahead with this the moment as I weigh up its advantages and disadvantages, and my GP has been quite good at helping me working out what might be a viable alternative. I am giving the pill a try at the moment, and seeing how things go.

So, that was my experience of having a laparoscopy to diagnose endometriosis and remove and ovarian cyst. I do hope this helps, even if it makes things just a bit less scary.  If you have any comments or questions I’d be more than happy to answer them. I could also add them into this blog post if it would be helpful.