“How did you get your doctor to agree to a hysterectomy for PMDD?”

by msjekyllhyde

“If you don’t mind my asking, how did you manage to get your doctor to give you the surgery? I’m a 22 year old woman who has been wanting this surgery for more than a decade for many of the exact same reasons you’ve listed (and some more besides), but as far as I’ve ever been able to research, it’s impossible to get a hysterectomy without there being some moderate to severe physical health issues to have the surgery preformed. Heck, even my sister’s doctor refused to preform it after she’d already had two children that she could hardly afford to support. I’ve always been completely infuriated that I haven’t had rights to my own reproductive system (my sister got pregnant the second time despite birth control AND condoms, so I have very bad trust with contraceptives) and I’m wondering if you actually found a doctor with sense or if there were other circumstances allowing you to have the surgery.” Gale

Hi Gale. I agree with you re our rights over our own reproductive systems! It’s a feminist issue for sure, the lack of research in this area is shocking. Did you see my post about a doctor trying to talk me out of the hysterectomy the NIGHT before the operation?!!

Here are the steps I took to get a hysterectomy, with removal of the ovaries, for PMDD. Note – I’m based in the South of England.

  1. January 2011, aged 34 – Joined the NAPS forum, a specialist forum for PMS / PMDD sufferers. Learnt a great deal on there about treatment options and specialists. I am indebted to the very kind and knowledgeable fellow PMDD sufferers whom I met there. Sadly all posts from the entire forum were removed, circa 2012.
  2. January 2011 – Had a private appointment with Dr John Studd, in London, as I was desperate to see a top PMDD expert fast. I remember being in tears (as usual!) when I first rang up to enquire. I could not afford it but felt that it was worth adding to my overdraft. This is the ONLY private appointment I had, all others mentioned are on the UK’s NHS (i.e. I only pay for my prescriptions/scripts!). Dr John Studd started me on hormone therapy (estrogen + testosterone + progesterone) as a first step. Note: Studd was the first healthcare professional in over a decade to offer me anything other than SSRI’s or counselling!!
  3. Hormone therapy did not fully suppress my cycle and I was highly intolerant to progesterone (the main culprit with PMDD) – I tried a number of types of progesterone over several months, both orally and vaginally. I could have tried a Mirena coil/IUD, but in the end I was unwilling to try any other forms of progesterone due to the awful ensuing depression they caused.
  4. I then requested that my local GP (doctor) refer me to PMDD specialist Dr Nick Panay, in London, as an NHS patient. I had learnt that I could do this because of the info on the (old) NAPS forum (those posts are now all gone). My written request included a) a full account of my symptoms, b) how it was affecting my life, including my suicidal thoughts, c) what I wanted to happen next, d) Panay’s NHS contact details. I gave a hard copy of this to my GP at an appointment, the surgery/practice had to agree to the referral. It was highly out of the ordinary for them to get this kind of request. I was not treated sympathetically by the local (male) GP in question.
  5. The GP surgery did agree to refer me to Dr Panay. This was not a decision that the GP I saw was able to make alone, it was a group or panel decision.
  6. May 2011 – I saw Dr Nick Panay, at Queen Charlotte’s & Chelsea Hospital, London, who was fantastic, he agreed to start me on Decapeptyl injections (at my request), a ‘GnRH analogue‘, another used is Zoladex, to shut down my ovaries and mimic menopause – it’s the best they can do to mimic what life would be like post hysterectomy.
  7. That was a big success, I stayed on Decapeptyl for 9 months in total (right up until the hysterectomy). Plus I continued with hormone therapy (but estrogen + testosterone only).
  8. As I refused to take any progesterone, I was not shedding my womb lining (i.e. bleeding), so I had to have the lining checked with some ultrasound scans (as serious problems can sometimes occur).
  9. July 2011 – Nick Panay referred me to a surgeon colleague who agreed to perform a laparoscopic hysterectomy with removal of the ovaries (provided I went away and thought about it for another 6 months, which was sensible). I had researched and wanted this type of surgery, I was a suitable candidate as I had no other complications, i.e. no endometriosis or abdominal scar tissue.
  10. By the time of the operation (February 2012, aged 35), I had been considering a hysterectomy for over a year, I thought about the decision every single day. In the end, I was tired of obsessing over it!

Why was I able to progress my treatment so speedily?

I believe that having a letter from Dr John Studd speeded up my treatment on the NHS. There were no other circumstances other than what I’ve written about in this blog. Finding the UK’s PMDD specialists (Dr John Studd and Dr Nick Panay) was key to me being taken seriously.

Plus at every stage I tried to document everything fully in hard copy letters to my doctors, i.e. for letters for their files given to them at appointments – this makes everyone’s lives easier, and I think also speeds things up as the doctors know how serious you are, and can see at a glance the huge negative impact the condition is having on your life.

There is so much to learn and take in about this topic, I have spent many days learning about it – luckily I am good at research, and am able to process all the information, have access to the internet, and was able to buy books about the topic (see my suggested reading list right at the bottom of the page). I documented the process for myself, i.e. wrote up notes in full after every appointment.

I was able to get my points across clearly during my medical appointments. But if I had been less able to do that, I would have tried to have taken an assertive friend with me to appointments, to fight my corner and remember to ask all the questions.

Being a divorced woman may also have helped me get treatment – a couple of married women have told me that they’ve been taken less seriously by doctors. It’s amazing that I need to write this in 2013, but my advice for married women seeking a hysterectomy for PMDD, would be to taken a hard copy letter from your husband to the appointment, stating that he fully supports your decision, or (if he’s assertive) take him to the appointment with you.

I am very grateful to the NHS for the treatment. If I hadn’t been able to have the hysterectomy on the NHS, I would have taken out a loan to have had the operation done privately. John Studd would have been willing to refer me, [from my notes: if having a laparoscopic hysterectomy done privately, these surgeons were recommended: Mr Peter Mason at The Wellington Hospital, or Mr Neale Watson at Spire Thames Valley Hospital].

It’s going to be a big battle for you because of your very young age, and if you are nullipharous (have never had a child). Are you in the US?

I wish you the best of luck with progressing your treatment, let me know how you get on. Here is a paper I suggest you print out and take with you when you see your gynaecologist: Management of Premenstrual Syndrome – Guideline by Nick Panay, Royal College of Obstetricians and Gynaecologists

Updated July 2013