About the author
‘If I didn’t have sex organs, I wouldn’t waver on the brink of nervous emotion and tears all the time’
Sylvia Plath, journal entry, 1950
[Note: There is compelling evidence that writer Sylvia Plath had severe PMS/PMDD]
Ms Jekyll & Hyde, suffered from a life-destroying form of the endocrine disorder Premenstrual Syndrome (PMS), also known as Premenstrual Dysphoric Disorder (PMDD). Determined to be cured, at the age of 35 she elected to have a oophorectomy / hysterectomy with removal of the ovaries (LAVH BSO), on the NHS, in London. The operation is currently the only permanent cure for severe PMS/PMDD. It has been very successful for her!
Ms Jekyll & Hyde started this independent blog to chronicle and share what she’s learnt. She believes that currently most doctors are woefully ill-informed about how to diagnose and treat this disorder, this must be changed. BUT women must also empower themselves with knowledge in order to get the best out of a seven minute consultation with their doctor.
From her early twenties, Ms Jekyll & Hyde was been plagued by horrendous mood swings which worsened in her early thirties, including having suicidal thoughts; this played havoc with her relationships and career. Over a period of a decade she saw a number of GP’s for depression, in the UK and in Australia, but not one of them suggested she track her depression alongside her menstrual cycle.
GP’s only prescribed:
- anti-depressants (SSRIs), i.e. Zoloft
- birth control pills
- Cognitive Behavioural Therapy (CBT)
- seeing a psychiatrist
She also tried these these supplements that were available without prescription, none made a positive difference that she could detect:
- St John’s Wort
- Agnus Castus
- Evening Primrose oil
- fish oil / omega capsules
- multi-vitamin & mineral tablets
- vitamin B6
By 2009 (aged 32) she wondered if she might have Soft Bipolar, Bipolar II or Cyclothymia. She was terrified at facing a life long battle with the ‘Black Dog’ and wondered if she would eventually take her own life. Divorced, she wondered if she would be able to sustain a relationship.
After a great deal more online research, Ms Jekyll & Hyde finally put a name to what she believed was wrong – severe PMS/PMDD. She had about two ‘good’ weeks per month (some women have less than one good week per month!) and was exhausted from years of rebuilding her sense of self-worth and confidence after every monthly crash. She had not previously been aware that PMS/PMDD could last for 10 days or more. Tracking her menstrual cycle against her mood swings/physical symptoms left her in no doubt about her self-diagnosis.
She experimented with taking anti-depressants only during the ‘bad’ half of the month – she responded to them within hours*, but even tiny doses made her feel woozy and exhausted for days.
In January 2011 (aged 34), she discovered the (old) NAPS forum and Professor John Studd’s site, and wept with relief, feeling sure that hormone treatment would help her. In January she also learnt from her online research that hysterectomy with removal of the ovaries is currently the only true cure for PMDD, which felt devastating and astonishing initially. However, it was absolutely amazing to learn that a permanent cure for her cyclical depression might be possible!
Desperate to see a specialist quickly, she had a private appointment with Prof. Studd in London. Studd agreed with her diagnosis – he was the first doctor to offer her anything other than anti-depressants/CBT/psychiatry; he prescribed hormone therapy (HRT). Her experience on HRT was proof that she was severely progestogen-intolerant. She could not afford to continue seeing John Studd.
She transferred her treatment to the NHS, to leading PMS specialist Mr Nick Panay, at Queen Charlotte’s & Chelsea Hospital, London. This was a massive relief. She requested injections of the GnRH analogue Decapeptyl (another is Zoladex), to temporarily shut down her ovaries and mimic a menopausal / post-hysterectomy state, whilst continuing with HRT (estrogen and testosterone only). This was a great success, she had her brain back the whole month long! She had not felt this mentally stable since perhaps her teens – this gave her great confidence that a hysterectomy was the right path for her. She remained on Decapeptyl right up until the hysterectomy.
Determined to be permanently cured, and after extensive research and deliberation, she had a oophorectomy / hysterectomy with removal of the ovaries (‘LAVH BSO’ – this means ‘Laparoscopic-assisted vaginal hysterectomy with bilateral oophorectomy’), this includes the removal of the cervix, in February 2012, aged 35, as it is currently the only permanent/’true’ cure for severe PMS. The operation was performed at Queen Charlotte’s & Chelsea Hospital, London, under the care of leading PMS authority Mr Nick Panay (but by another surgeon), on the UK’s National Health Service (NHS) – it has been very successful.
Ms Jekyll & Hyde is indebted to the brave women whose stories and advice she first encountered on the NAPS forum in 2011 (sadly the old NAPS forum posts have all been removed, though the forum is now open again) – without the support of this community, she might not have plucked up the courage to go through with the hysterectomy, due to the regrettable lack of independent information available. She is still in touch with a number of these women, she is not aware of any who regret their decision to have a hysterectomy for PMDD.
Ms Jekyll & Hyde, now aged 40, is a strong advocate of HRT, she takes both oestrogen and testosterone (6 monthly injections of estrogen) and has no plans to stop. She remains under the care of the NHS, for the management of her HRT.
She is absolutely convinced that a oophorectomy / hysterectomy with removal of the ovaries was the right choice for her. She is free from monthly mood swings, is moving forward with her life with a new vigour, though there are some learned behaviours to shift. The nightmare of living with PMDD now feels like a bad dream.
Severe PMS is the sort that destroys careers and marriages is paradoxically easier to treat because the severity requires proven treatment administered by a medical practitioner. These treatments essentially rely on suppression of ovulation and thus removing the hormonal changes (whatever they are) of the ovarian cycle and hence removing the cyclical symptoms of PMS.
Professor John Studd DSc, MD, FRCOG
All truth passes through three stages
First: It is ridiculous
Second: It is violently opposed
Third: It is accepted as being self-evident
*A trait common to PMDD and Bipolar Disorder. See Why Am I Still Depressed? Recognizing and Managing the Ups and Downs of Bipolar II and Soft Bipolar Disorder, by Jim Phelps M.D.; and Severe PMS and Bipolar Disease – a tragic confusion by Prof. John Studd
SHARE YOUR STORY ANONYMOUSLY ON THIS BLOG
I would love to hear from women who rid themselves of PMDD / PMS by having a oophorectomy / hysterectomy with removal of the ovaries. By sharing your story anonymously on this blog, you can ultimately help countless other women who are currently suffering and feeling very alone. It doesn’t matter how long ago you had a hysterectomy, or maybe you had the operation for another primary reason. You can provide as much, or as little, information as you like. Please drop me a line by commenting below one of the posts on this blog.
I log-in to read / approve comments about once a month, so please bear with me. This is because I don’t want to be continually reminded about this topic, now that it’s behind me.
GENERAL QUESTIONS ABOUT PMDD / HYSTERECTOMY / HRT
- FIRST check out the links below the blog, starting with Professor John Studd’s site.
- NAPS forum – very useful indeed! Find others to talk to. Post on the forum if you’d like someone to add you to an excellent private independent Facebook group for women considering/or post hysterectomy for PMDD.
- Check out HysterSisters or the Hysterectomy Association, both have excellent forums.
- There is a lot of information to take in so keep a record of what you’ve learnt as you go along.
I am not a medical practitioner, I am sharing information in order to help other women. This blog is independent, all views are my own. Do your own research, think about it, pick what works for your body, your medical history, your life. Take good care of your body AND your brain, weigh up the pros and cons of treatment for YOU.
Don’t scare yourself unnecessarily by doing online research until the early hours if you’re feeling terrible, everything seems far worse in the middle of the night! The internet is an incredible research tool, but there are some scaremongering anti-hysterectomy propaganda sites out there, containing a disgraceful plethora of inaccuracies and sheer nonsense!
I wish you all the best in progressing your treatment for PMDD. Track your moods against your cycle. Be strong.
Updated February 2017