I promise to get back to more joyful, possibly even festive style posts shortly. Right now, however, I want to talk to you about gynaecology. I make no apologies. Long term readers, if there are any of you still hanging in there, will know of my fondness for banging on about nether regions.
I had a hysteroscopy on Thursday. It’s my second one this year, because I’m just lucky like that.
I will explain. A hysteroscopy is a first line diagnostic procedure that allows doctors to look inside your uterus and have a good old rummage about if it appears that all is not well gynaecologically speaking. It’s usually done alongside an internal ultrasound. If you have unexplained bleeding or pain or bits falling out, in they go, rummaging around like a pensioner who’s lost their bus fare.
A hysteroscopy consists of a camera and a little hosepipe. They pop you in stirrups, push the camera/hosepipe contraction inside you, open your cervix (if it isn’t already open, which for most of us it should not be) and push it in. They then fill the uterus with water, move the scope around to have a look at what’s happening, and very often, take a biopsy sample while they are in there. If you have polyps they will sometimes remove them while they’re there. Occasionally they may also do what’s called an ablation. This is where they take a hot wire and sear off the bits inside your uterus that are causing bleeding (if this is what’s causing bleeding, obviously).
They usually do this as an out patient procedure. They estimate it takes five to ten minutes to complete. You are generally told that pain will be mild (like period cramping!) and that taking over the counter pain relief half an hour before the procedure will be sufficient. They also tell you that you will need someone to drive you home afterwards.
So, as you know, I had an oophorectomy last September where my ovaries and what was left of my fallopian tubes were removed. The plan was to remove my uterus too, so I would have had a total hysterectomy. The surgeon discovered that my uterus is glued to a lot of other parts of me, and by removing it there was a strong chance she might nick my bladder or bowel and I could be left incontinent, so I kept my uterus. I have no HRT because I had surgery in the first place because of my increasing intolerance to progesterone and oestrogen. All went well after surgery and I sailed into the hot, sweaty life of a menopausal woman.
In February this year I went to my GP because I had had two weeks of random bleeding which clearly should not have happened. My GP referred me to the hospital and after a false start I saw a consultant who said that they should do an ultrasound followed by a hysteroscopy to see what they were dealing with. At this point I had no idea what a hysteroscopy was. I did ask, and it was explained briefly and I was simply told that it was routine.
I had my ultrasound and then received my letter regarding the hysteroscopy. The information about pain relief did not tally with the information about needing to be driven home, and I was not reassured about the ‘it’s just like cramping’ line, because my periods were hideous.
I did my research. It took me no time at all to find out that a) I was clearly contra-indicated for the procedure to go well and b) I should have been offered the procedure under general anaesthetic as an option and that my consultant had not looked sufficiently at my notes nor offered me appropriate pain relief.
I spent the next few weeks frantically trying to get hold of anyone related to my case (the consultant who had sent me for the procedure was a locum and not my actual consultant) to discuss it. I could not get anyone to talk to me. I tried my GP who utterly dismissed my concerns and when I asked for valium, actually inferred I only wanted it to become addicted to it and gave me 3, 2mg diazepam tablets and a ‘you’ll be fine, you’re just hysterical,’ line.
I finally went for the procedure. I saw the same locum consultant and raised my concerns. She simply asked me if I wanted the procedure or not and ignored everything I said. I decided to risk it when she said that if it was too painful, she would stop.
It was the most brutal, painful, humiliating procedure of my life and put me in shock. She then said that even though my ultrasound had shown up abnormalities she didn’t think there was a problem and discharged me.
I spent three days in agony. She had spent twenty minutes pushing and prodding me with a rigid scope. My uterus is attached to lots of other bits of me and all the wrenching was agony. She also, it later transpired, gave me a blood blister on my cervix where she had basically been bashing away at me so hard.
I then had to return to the hospital because I had already had several failed smear tests at the GP surgery and had been supposed to have one at the same time as my hysteroscopy, which she also didn’t complete. This time I went to see a different consultant who did the smear.
All this time I had a complaint running with the hospital. On the day I went for my complaint meeting, my letter came back saying that the hospital smear had been unsuccessful and that I must go again.
My complaint meeting was not only about my own case, but about the fact that I had ascertained that many women like me were being let down by the hysteroscopy system within University Hospitals Leicester, and indeed nationally. I’d been given a huge amount of support and information by the group Action Campaign Against Painful Hysteroscopies. It was becoming increasingly clear that this was not just a case of me being a ‘difficult’ patient, as I was being painted. I wanted my own case resolving to my satisfaction, but also to see what could be done to stop other women going through what I endured.
My complaint is still ongoing. My treatment is still ongoing. My meeting ended up a strange mixture of addressing issues in the system and a kind of ham fisted attempt to figure out what to do with me next. I left the meeting confused, and very concerned that the way my treatment was going, I was basically being used as a kind of aberrant experiment.
In the end I paid for a private consultation and went back to see the consultant who had operated on me last year. She listened to everything I had to say and we formulated a treatment plan. She decided to move me to her care as an NHS patient, and that she would treat me from now on. I would have my smear and hysteroscopy under general anaesthetic with her doing the procedure and we would go from there.
In recent weeks I returned to the hospitals for another ultrasound. I went for a two hour pre-op appointment and this Thursday I presented myself as a day patient for my surgery. I was, as you can imagine, extraordinarily stressed about this.
My consultant came to find me mid morning to say that my notes were lost. Normally when a patient’s notes are lost, they will be sent home because a surgeon cannot risk doing something to a patient by accident. She explained that because she had operated on me before and knows my history, she was confident I would be alright, but wanted to check in with me to make sure I was ok with her doing it. I was. The thought of going home and doing this all over again was making me feel sick. She did stress that if the anaesthetist was not happy, I could still be sent home.
The anaesthetist came to find me. He told me that notes are often mislaid (gynaecology in UHL operates across two sites) from site to site, and they had been hoping mine would be on the other site and they could just send for them, but it appears my notes are actually totally lost. He said that if he sent me home on that day, it would still be a problem if I were rescheduled. He did a tonne of paperwork and asked a lot of questions and finally decided the operation could go ahead.
Then it transpired that my pre op notes had also gone missing. As had my anaesthesiology notes. I was bumped down the list for surgery and all the notes had to be re-done. Luckily my blood test and swabs from pre op were on the computer system otherwise I would have still been sent home.
I had my surgery. I went into the recovery suite, and after that there was a problem because there was no bed for me. Eventually I was sent to a ward where I was bundled into a reclining chair, draped in a blanket until I was well enough to go home.
I am so frustrated about so many aspects of my care. On Thursday, all the staff I dealt with were exceptional. They were kind, pro-active, thoughtful and resourceful. They listened to me. They used their common sense and they did everything in their power to paper over the systemic failures and help me. I was really lucky.
I was particularly lucky because last week I was called by the admissions team asking me if I would fill a gap on a list and go in for surgery on Monday. I nearly agreed until I realised that it would not be my consultant doing the surgery. If I had gone in on Monday I would, without a doubt have been sent home, and I’d still be waiting, only this time indefinitely until they figure out where my records are, if they ever do.
Now I wait for my results.
In the meantime, if you are in a position where you are required to have a hysteroscopy, here are my findings and advice.
They say that only 10% of women fail to tolerate this procedure. The campaign’s findings and research indicate that it is more like 25% of women.
If you are going for an out patient procedure hysteroscopy make sure that you have discussed your case and any concerns with your consultant before you agree to have it done.
You are entitled to a general anaesthetic for this procedure if you wish. If it has not been offered to you, you are still entitled to it, and if you think you want or need it, then discuss it beforehand.
If you decide to go with the outpatient hysteroscopy option, make sure that you take appropriate pain relief before you go. Make sure that there is gas and air (entonox) in the room if you need it. There is also the option for local anaesthetic on the day. They inject into the cervix. This can be extremely painful in its own right, and often does not work very well (as well as having side effects) but it may be an option you wish to discuss.
You will definitely need someone to take you home.
If you have the procedure without sedation/anaesthesia and it is too painful, you can tell them to stop and they must stop. You do not have to endure this. You have not failed if you cannot do it.
If there is a chance that an ablation or polyp removal will occur then you are absolutely within your rights to ask that they discuss appropriate pain relief with you before doing it. If they make their mind up once the hysteroscopy is underway you are allowed to refuse the treatment. It is not the same as a biopsy and evidence shows, naturally, that it is considerably more painful for women having this than just a straightforward hysteroscopy.
If you are one of the lucky ones who sail through this with minimal discomfort, all hail to you. The procedure may be problematic for you if:
a) you are post menopausal
b) you have a closed cervix
c) you have never had a vaginal birth
d) you have a history of polyps, endometriosis and/or any scarring (they use rigid scopes and bend you to the scope)
NICE guidelines, released this year recommend that hysteroscopy be used more as a first line diagnostic tool because of the quality of the results it gives. Currently, sixty women a week are having this treatment across Leicester hospitals, under the guidelines numbers are set to rise. Training does not always rise with levels of activity or need.
The Action Campaign Against Painful Hysteroscopies is lobbying for:
Appropriate consultation with the patient prior to the procedure.
Appropriate pain relief for the procedure.
Pain scoring after the procedure so that work can be done on improving the service and study.
Proper training to be given to staff in line with current findings.
Clear information to be offered in the form of letters, booklets and consent forms.
For the patient to be treated with dignity and respect at all times and to be listened to.
We still have a long way to go.