Life after hysterectomy for PMDD / PMS [aged 35]. UK

Life after a hysterectomy for PMDD / severe PMS, aged 35. It's vital that BOTH OVARIES are removed. Yes, it worked!! I am a strong advocate of HRT.

Month: February, 2012

Day 3 and 4 after a hysterectomy for PMDD

Day 4 post op, 27/2/12: Mood = buoyant! I wake up feeling completely clear headed and happy, the Citalopram I took last night has worked a treat. I feel less stiff and fragile than yesterday.

Day 3 post op, 26/2/12: After a good night’s sleep I sit in the back garden in the winter sunshine, all wrapped up. Mood = slightly irritable (as my partner decides to burn leaves and I get covered in smoke and ash), and pretty fragile after all the vomiting yesterday.

It’s all about my bowels right now I’m afraid – I feel bunged up again and use a glycerol suppository, it works within a couple of hours. I put a low stool in the bathroom as per the NHS physiotherapist’s leaflet.

Close family members visit in the afternoon, I feel perky and glad of the company (important: they checked ahead on the same day that it was ok to visit). I miss the bustle of the ward and the female company.

In the evening my mood drops very dramatically, I feel terrible (and very glad I’m not alone in the house). In the past general anaesthetics have made me depressed and I had anticipated this. I take 10mg of Citalopram (left over from an old prescription, it kicks in fast for me). I can’t get to sleep as I feel too low and anxious, so I get up and watch TV online until 3.30am, which helps clear my mind and I go to bed not feeling anxious.

Activities: sitting around, going up and down stairs slowly. Being careful not to lift anything heavier than about 1kg. Luckily my partner works from home and is taking care of me.

Day 2 after a hysterectomy for PMDD – learn from my spicy food mistake

Warning – I write about vomit and diarrhoea in this post

25/2/12: In the early hours of the morning I feel nauseous and ask a nurse for a bowl, I vomit repeatedly. My bowels are gurgling so I shuffle to the bathroom (taking my cardboard bowl with me). I’m very bunged up and am afraid of straining so soon after my operation. Despite the NHS physiotherapist’s leaflet’s advice to use a low stool for your feet (so that you don’t strain during a bowel movement), there is no such stool in the bathroom!?! I finally move my bowels (hallelujah!), but immediately afterwards I have explosive diarrhoea, plus wind, plus more vomiting.

I finally shuffle back to bed to vomit some more. Thankfully I have no more diarrhoea. I feel knocked for six, and very foolish indeed for choosing spicy hospital food from the list (learn from my mistake!). If this had happened while I was at home I would have felt very frightened. At least in hospital my observations are still being taken regularly.

6am: the nurses wake us, I can’t keep down water or any tablets for now. Despite this I’m encouraged by the nurses to have breakfast (?!), which I refuse. Luckily I brought along my own plain dry crackers (water biscuits). Hours later my stomach calms down.

The doctor gets to our ward to do her rounds in the afternoon (it’s the weekend, so there are less staff). I’m discharged, given strong paracetamol and ibuprofen to take home, plus a follow up appointment with my surgeon, and a note to have a follow up appointment with my gynaecologist/menopause specialist in 6 weeks.

I have a shower and wash my hair, I wouldn’t have been able to wash my hair yesterday. I wear warm pyjama bottoms home as  I don’t own loose enough trousers.

My partner drives me 100 miles home in the sunshine, I feel slightly irritable, weak/fragile and feel the bumps in the road (despite having a pillow on my stomach under the seat belt). Not surprisingly, I feel sorry for myself and have a cry that evening at home, it’s been a tough day, plus I haven’t had a good night’s sleep for three nights.

Day 1 after a hysterectomy for PMDD

24/2/12, morning: The drip is taken out, I’m puffy everywhere from so much liquid. The catheter is taken out (which doesn’t hurt at all, I was nervous that it might). I am told that I must pass urine twice before I can be discharged (I’m given a large clear measuring jug), hours pass before I do (normal). By this point I am not at all embarrassed to carry around a jug of urine!

I get out of bed for the first time. Normally they get you out of bed on the day of your op, but my blood pressure was a bit low yesterday, plus I think I got overlooked due to the nurses workload. I eat all my meals in the communal dining area, everyone is strongly encouraged to do this, it does make you feel more normal, another great idea. There is a TV in the communal room, but not by our beds since they want us up and out. I have a shower (dry shampoo to save washing my hair) and wear my own pyjamas.

A physiotherapist drops off a leaflet about exercises/precautions, including starting gentle pelvic floor exercises today! This seems early to me, but I try, it hurts and I ask for an additional painkiller, which works quickly. My chest still feels tight from the gas used in the operation, which can take some time to disperse (hence the need for the deep breathing exercises). All patients have to wear the anti-DVT stockings day and night (if you don’t you have to sign a disclaimer), everyone complains how they dig into the thighs.

The doctors do their rounds. They are delighted as there were no complications with my operation (none were expected). I’d previously arranged with my surgeon that I’d leave on 25th (I live 100 miles away so I needed to make arrangements in advance), but I would have been discharged that afternoon otherwise.

I am so constipated I cannot even pass wind (not good!), but I do burp a little (normal, everyone is burping and farting). I have another dose of Mil-Par (gentle laxative) from the nurses. But I am so keen to get my bowels moving that I also drink 2 cups of my own Dr Stuart’s laxative tea, AND have tasty chickpea curry (hospital food) for dinner – in hindsight this was a big mistake! During the day my stomach has been getting more swollen and tight.

Evening. Mood = calm, positive, grateful.

A close friend visits again, I’m glad to see her. I’d decided in advance that I didn’t want any visitors yesterday, this was the right decision as I couldn’t talk much and was so woozy. We walk up and down the corridors, I can only shuffle but it’s important to get moving. Some women walk holding on to the walls for balance, and holding a rolled up towel to their stomach, they may have had (open) abdominal surgery not laparoscopic surgery.

Day of the hysterectomy for PMDD, I’m first on the list!

23/2/12: At 6am everyone on the ward is woken by the nurses, I take my final ‘Preload’ sachet/drink – it seems really civilised as I haven’t had hours and hours of nil by mouth. I’ve been allowed to stay the night before only as I live 100 miles away, otherwise I’d have arrived at the hospital for 7am. I’m asked when my last bowel movement was (21st). It turns out I was due to have an enema yesterday (it didn’t happen – this comes back to bite me) and now time has run out as I’m first on the list for surgery at 9am (I’m very glad as I was dreading an anxious wait)!

The anaesthetist comes to my bedside wearing a suit, it’s the first time I’ve met him. He’s tall and very well spoken, his warm manner instantly puts me at ease, he squeezes my hand, he has no clipboard. I forget to ask for a pre-med and am not offered one, there is no waiting around. The woman in the next bed pops over to wish me luck.

Wearing a surgical gown, my glasses, anti-DVT stockings and slippers (it’s too warm for a robe), a nurse walks me through corridors and a lift to the anaesthetic room and I’m asked to hop on a trolley. I’m not physically ill, and I much prefer walking to being wheeled and feeling helpless – great idea, and it saves money.

The anaesthetist, now in his scrubs, tells me that he likes to keep people under for as little time as necessary, so he won’t administer drugs “until he sees the whites of the surgeon’s eyes“. In the meantime he puts the needle in my (non-writing) hand, ready for the surgeon’s arrival. At 9.16am the tall charismatic surgeon bursts into the room with a big smile (not yet in his scrubs), and shakes my hand (he’s much more laid back here than in his office, where I’ve met him twice before). The atmosphere is very upbeat and some how slightly British sitcom-like, I feel in the best possible hands. The anaesthetist asks if I noticed much of a difference on Decapeptyl. “Life changing”, I say. “Now you can get on with your life”, he says. I’m asked to state what operation I’m having, my name and DOB (I’m asked my name and DOB multiple times per day whilst in hospital), and my wrist tags are read. “The first drug is like the wooziness of a gin and tonic”, says the anaesthetist, “and the second is like the ice..

I wake up confused in the recovery room, not knowing where I am; I come around again back on the ward, realise the op’s happened, and feel massively relieved and calm. I have an oxygen mask on, a drip and a catheter (which is not uncomfortable, I’d worried it might be), and my ‘observations’ (blood pressure and temperature) are taken every 2 hours for the next 12? or 24? hours. I enjoy the morphine, luckily don’t feel nauseous at this point, and have very woozy grateful/relieved thoughts for the rest of the day.

My throat is sore from the pipe that’s been down it (which you never see) and my voice is very croaky. My wounds are all covered with sticking plasters (with tiny bits of tape underneath):

  • 1) a small incision inside my belly button
  • 2) a small incision just above my pubic hair
  • 3) & 4) small incisions at the positions of the ovaries
  • plus I have stitches inside the top of the vagina
  • there is a only a tiny amount of vaginal bleeding

I’m a bit swollen but there is NO external bruising (a tiny amount subsequently appears). My chest area feels tight due to the gas used to inflate my abdomen during the laparoscopic procedure (the gas can take a while to disperse). Aside from that I’m in no pain.

I get a nurse to quickly ring my partner using my mobile, so he knows I’m ok. By 5pm I’m making notes in a pad for this blog. A doctor comes to tell me that it was all “very, very straightforward” and that they’re delighted.

For dinner I am offered a regular meal (bad idea!), but I request soup and jelly only, eating a regular meal the day of an operation would make me sick. I request a laxative and am prescribed Mil-Par. I use my regular HRT that evening. During the night I think I have my first ever (and to date only) hot flush (though it’s hard to be sure since everyone complains about how hot the ward is, and I have to sleep wearing the aforementioned stockings) so I apply more estrogel (6 pumps total that day) and it goes away.

Evening before hysterectomy for PMDD a doctor tries to talk me out of it

22/2/12: I arrive at the Victor Bonney Ward at Queen Charlotte’s & Chelsea Hospital for 3pm. I’ve been allowed to stay the night before the operation only as I live 100 miles away, otherwise I’d have arrived at the hospital for 7am the next day. I’m assigned a bed (in a bay of 4 beds), weighed, and told I’m on the Enhanced Recovery Programme – i.e. I’m to take a Preload sachet (neutral tasting nutrients/carb powder) with water at 7pm, 10pm and 6am; I’m to do deep breathing exercises after the op; am to be out of bed the day of the op; to (normally) leave after 1 night; and do not need to do a bowel movement before leaving. I’m allergic to penicillin so I have red ID wrist bands on each wrist.

There are two choices left for dinner, and I plump for vegetable curry, in the hope that it’ll get my bowels moving before tomorrow morning – in hindsight eating spicy hospital food was a big mistake! I enjoy the bustle of the ward, and hearing what’s said behind the disposable paper curtains (there is very little privacy).

I’m feeling calm and positive. Then a 39 year old female doctor who I’ve never met before comes to see me with a consent form. To my amazement, at the final hour she tries to talk me out of the operation (despite admitting she is not a menopause doctor), saying “woman to woman”:

  • It’s too radical 
  • Maybe if I met the right man I would want to have a baby (!!)
  • I could have just my ovaries removed and have a Mirena coil
  • I could just wait for the menopause to arrive naturally (!!)
  • I should consider delaying restarting HRT until after the oncology (just in case it turned out that I had cancer (??!!), and therefore couldn’t take HRT). There’s never been any suggestion that I have cancer.

I burst into tears and explain that I’ve been considering the operation for 14 months, and why. I sign the consent form. Shortly afterwards a different 30 something female doctor comes in, who I’ve also never met, to double check about the loss of fertility issue!

After getting this far, I strongly resent my ability to breed being considered of more importance than my mental well being!!

A close friend visits, bringing trashy mags and an eerie doll for my collection (she knows what I like!). Her timing couldn’t be better – she is also shocked about what just happened, as she’s known me since my teens and understands how difficult life with severe PMS/PMDD has been. If she hadn’t visited, I might have lost my nerve and gone home that night, setting my treatment back months, which I would have regretted.

Laparoscopic hysterectomy video – amazing and strangely comforting

Wow! I’ve just watched a full length narrated laparoscopic hysterectomy video performed by the kindly voiced Dr Kevin Stepp, in the US. I wasn’t ready to watch one of these before today, I’d just read up on the procedure, but with 5 days to go until my operation, I felt ready to look. I found the video strangely comforting and absolutely fascinating, it’s in real-time and is to educate doctors, it’s completely unsensationalist and neutral.

I am not suggesting that you should watch this too, I’m just sharing that as someone about to have the same surgery, it has helped me by further de-mystifying the process. I hope it goes without saying that you should not watch this if you are the squeamish type. Also, I watched it in the day time when I was feeling calm and postive – please don’t watch this in the middle of the night if you’re feeling low. Look after yourself.

It’s in 4 parts on Youtube, it includes removal of both ovaries and the cervix (after a full discussion with the patient). The patient (who in this case had fibroids and pelvic pain) was home within hours – in the UK the NHS would keep you in for a couple of nights. Each part is about 10 minutes long.

Part 1

Part 2

Part 3

Part 4

Inspiring hysterectomy for PMDD success stories!

Tonight I found a long thread of post op success stories (for PMDD/severe PMS) on the HysterSisters forum – it’s very uplifting! I’ll keep adding to this post as I find more.

http://www.hystersisters.com/vb2/showthread.php?s=&threadid=187521

And another: http://www.hystersisters.com/vb2/showthread.php?t=423277

Posted here by Stella, April 2011:

I am now 53 years old. I suffered from pmdd before anybody called it that. I remember making the rounds to doctor after doctor only to be told I had pms or needed to see a psychiatrist. All of what I read above was true for me also. I would get so angry, so emotional, so filled with rage. And even though I knew it was because of my hormones and that I was acting irrational, once I was in the zone, I felt my outbursts were justified. Finally I decided that I couldn’t take anymore and thought about ending my life; I was about 35 years old.

I decided to go to the doctor and tell him that I had horrible periods, bled copious amounts, with severe cramps. (I lied.) He told me I could have a hysterectomy. I had a total hysterectomy and it saved my life. Ever since, I take some estrogen each month. I have no more symptoms. Life has been extremely satisfying. In a few years I will try to get off the Premarin, but for now I feel great.

Unfortunately, my daughter now suffers from pmdd. She is too young to get a hysterectomy, but nothing else has seemed to work well. (she has tried antidepressants). So sad that the medical profession is still so largely unaware of this condition. Just went to a doctor the other day that recommended psychotherapy and kept calling it pms. Good luck to everyone out there suffering from this! Hang in there!

Read Stefanie’s post at her blog Redefining Life w/PMDD, October 2010:

It is hard to believe it’s already been 8 months since I had my hysterectomy.  With 4 kids, sports, school & life’s regular chaos, the days & months have just flown by.  Scary how fast time flies when you aren’t dealing with pain.  I don’t have to look at the calendar before I make plans..

Posted here by Little Panda RN, July 2009:

I had a TAH with BSO 11 years ago. It was the best thing I ever did. Before my hysterectomy I was a basket case when that time of the month came around, crying one minute and madder than he** :angryfire the next. Since the hysterectomy I no longer have PMS. I sure do not miss the mood swings. I also have a friend who kept her ovaries and she still gets the PMS symptoms.

Goodbye little earthquakes? Orgasm quality after hysterectomy for PMDD

I’ve been keeping myself extremely busy since I last posted, which has been great as I haven’t had time to dwell on the forthcoming hysterectomy [23 February 2012] I’ve elected to have to cure my severe PMS/PMDD. But today was quieter, and I’m tired too, so I’ve just had a cry.. Because the bit of the operation I feel sad about is the loss of uterine contractions during orgasms [the amazing intense sensations/shudders you can have during the best part of the month]. That sounds very medical, but hopefully you know what I mean! This is a hot topic online and today I foolishly read some very ardent anti-hysterectomy propaganda from a couple of women who I think are in dire need of counselling.

My [male] gynaecologist and [male] surgeon tell me that orgasms may be different after the operation. My own research suggests that they’re pretty likely to be less intense, possibly very different indeed. But it also seems you need to give yourself loads of time to heal, a year or so, to truly get to know your body’s response again. [I’m allowed to have intercourse again in theory 6 weeks after the operation, fyi]. Some women say that it’s like comparing a Rolls Royce to a rickshaw; other women don’t notice much difference. The testimonies I’ve read by women who had the op for severe PMS suggest that it’s all worth it to feel happy!

I can have psycho-sexual counselling on the NHS, which I’ll take. Operation aside, I could do with the counselling, as the whole nightmare that is severe PMS/PMDD, plus the Decapeptyl injections to shut down my ovaries and mimic the menopause, have left me feeling less womanly than I used to, and at times non-sexual.  I need to figure out who I am again, and adjust to this new life.

My jolly partner and I have just been talking about it. He never fails to make me feel better.

The pros far out weigh the cons for me. Everything’s ok again.

Update May 2013: Post operation, I am happy to report that I don’t notice a huge difference in the quality of orgasms.