“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.
- 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.
- 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!!
- 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.
- 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.
- 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.
- 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.
- 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).
- 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).
- 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.
- 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
Life after hysterectomy for PMDD / PMS [aged 35]. UK 
I’m wondering if anyone reading this might know a doctor in the Eastern United States who would consider this route. I’m a mother of 5 and desperate. The days where this occur are absolutely terrifying and I’m at a complete loss. Any help or recommendations would be much appreciated.
I am 30 years old from Atlanta Ga and was diagnosed at 13 with what’s called a uterine didelphys which is pretty much two of every reproductive organ. At 21 I lost a baby girl at 24 weeks and was told by over ten specialists I’d never be able to carry a child but on Christmas of 2013 I had a beautiful baby boy. I have been badly addicted to pain meds and anti anxiety meds for years I started asking for a hysterectomy after the loss of my daughter but no one word agree to it. I’m miserable monthly and only get about one good week. I don’t wanna put my life or an innocent child at a huge risk so I started asking doctors to do a complete hysterectomy but so far all have said no. Pms/Pmdd is now effecting my parenting. If anyone can give me any advice it would be appreiated.
Are there not any options in the United States? I was informed that Tricare will not cover this bc PMDD isn’t a reason to get a hysterectomy. So that’s frustrating bc it’s much worse than bleeding to death. I’m really discouraged. Did you end up having to pay for it then?
Hey, sorry about taking a while to get back over here – life’s been hectic! That sounds like a lot of process and worry. I’m rather amazed at all the steps you had to go through to get it done, but I’m glad for you that you managed to accomplish it. Thank you so much for the detailed explanation in response for my question. I’ll be keeping this page as reference for years to come in case I ever get a chance to get anything done with my own problems on the issue. And yes, I did read that post you made about the staff trying to talk you out of it as if you wouldn’t give the subject proper attention yourself. -_-” Sometimes the medical profession does embarrass itself…
Sadly, yes, I am in the US, in Mississippi (AKA, the deeeeep conservative south), and given that a just a couple of years ago we had to struggle to overturn a proposed amendment defining personhood as beginning at the moment on conception (which threatened not only the only abortion clinic in the state, but also common oral contraceptives as well as the lives of many women whose health or lives would be endangered by pregnancy), I seriously doubt I’d be able to find any doctors anywhere in my area to help with this. I wouldn’t be able to pursue having a surgery or other treatments anyway because while my insurance is presently excellent, I’m a college student with no money worth speaking of. And Yeah, I’ve never reproduced, so that doesn’t make doctors any more likely to help me. It’s likely to be several years before I’m settled with a job and home to have cash enough to try any solutions to the problem, but I’ve been eyeing them in advance anyway. Basically my reasons are this: 1) My periods are literally debilitating. I would literally bleed out and die if it were not for the hormone adjustments thanks to birth control, and my cramps and other symptoms are utterly miserable no matter what BC I take. Since they took darvaset off the market, I haven’t found a doctor willing to give me a pain medication that can actually touch my cramps at all, and treating them with large quantities of Tylenol or smaller doses of alcohol so I can at least get out of bed just can’t be doing anything good for my liver. Besides, I hate feeling high on medication or drunk as a necessity anyway. >_>” 2) There are numerous health problems in my family, including cancer, heart disease, and best of all, varying amounts of mental instability and disturbing amounts of depression. I’m healthy enough myself and have a good grip on what I have inherited or developed, but I would hate to inflict this bag of bad genetics on any child. For the last ten years I’ve been certain I’ll never want children, but even if by some act of providence I do change my mind, I plan to adopt rather than procreate, because blood ties mean nothing to me and orphans need love too. 3) As previously stated, I just don’t want freakin’ kids! However, even though when I do have sex I used birth control, condoms, pulling out (it only reduces odds by like 30%, but hell, every bit helps), and not having sex when I’m at higher fertility on my monthly cycle, THAT DOESN’T MEAN I WON’T GET PREGNANT. I don’t want to face the risk, and I don’t want to face the decision of having an abortion or not! I think I should have the right to jump the gun on that constant state of worry/fear and the moral quandary itself.
However, I’m pretty sure I can’t legally “get fixed” in the States without having already given birth (something I never want to do anyway), or having a medical condition that proves that pregnancy or my own cycle is dangerous to my health or that of any fetus (which I don’t technically qualify for) I’d conceive. I really need to get this verified, but I haven’t had much luck understanding the laws I’ve been able to look up online, and I haven’t come across a doctor yet even comfortable with discussing the notion or explaining the laws in any detail after just vaguely stating that it’s a bad idea.
Anyway, I guess the long comment here wasn’t very necessary, but I’ve always been pissed about politics being jammed up MY damn uterus, and I felt like sharing my story a bit. Hopefully in several years when I’ve built a career I’ll be able to afford looking into possible solutions here, or perhaps out of the country if it’s necessary.
Switch out Colorado for Mississippi and I could of wrote that. I dont have to worry about the pregnancy thing luckily. Im 35 been w/ the same guy for 18 yrs married 14. We were able to convince his Dr to fix him in our early 20’s she made us wait a year then come back if we were still sure.
23 yrs Ive suffered. It affected my school years missing days, or Id get in trouble for standing in class because it hurt less. Then after a laparoscopic surgery for a huge ovarian cyst at 23 my symptoms have only gotten worse. I spent today hunched over missing out on 3 different things I was invited to. I run fevers with my periods, I have to use a tampon and pad and stay close to bathroom in case I gush out. Been puking and spewing fluids out of every whole since 5am. Drs only care about the fact I have HBP and brush off anything they dont relate to that. Wacky hormones, severe pain… this cant give one high blood pressure?
I so feel your frustration.
I just found your blog tonight and have read your story, and I’m so happy for you that the procedure has been a success. I have today been offered a LVAH with ovary removal by my Gynaecologist, who totally understood how bad my PMS is. I was on Prostap and Livial for 9 months, and the crash when they wore off in June was so utterly devastating, I thought I might harm myself. Your blog has really helped me, thanks.