"Painful Hysteroscopy Procedure"

Last September, I had both my ovaries removed at the Nuffield Hospital in Leicester as a result of finally being diagnosed with a form of PMDD. I had originally been referred to the Leicester Royal Infirmary under the NHS but a series of failures on their part to keep my appointment schedule led to complications which meant I took the decision to have the procedure done privately. The procedure went well. My uterus was left intact as there was so much scar tissue from previous surgeries it was deemed wise to leave it in place. I recovered well and have been going through the menopause ever since. I am contraindicated for HRT so have no hormones left and am effectively going cold turkey.

At the end of January this year (2018) I noticed that I was experiencing small amounts of bleeding. I should not have been bleeding at all, as I had also had a private blood test done since the surgery and my hormone levels are at zero. I went to see my GP when the bleeding carried on into February. My GP referred me to University Hospitals Leicester for investigation. To speed the process up she booked me in for blood tests and an interim smear test to see if the case needed escalating (I was booked in as a non-urgent referral rather than under the two week cancer scare guidelines).

My cervix is incredibly difficult to find and I have a history of problematic and incredibly painful smear tests. My GP attempted to do one and failed. I was then sent to see the nurse at the practice, who attempted it four times before giving up. I was told that it was probably for the best as I was outside my three year smear test recall anyway, and that even if she had managed it, it probably would have been sent back untested (this is appalling). She said that I was due a smear in April anyway, so when I went to the hospital for my appointment, if I mentioned it, I would be able to get a smear done there. I had to go and see my GP later the following week for my blood test results. I told him I was concerned that I may have to have two smears given that the regular smear referral service and the hospital may not line up, and I wanted to be sure that wouldn't happen as they were so painful for me. He reassured me that this would not happen and that in cases like mine it was common to refer to the hospital where they had better equipment to make smears less painful. I am adding in this detail to show that it has been documented and noted that I have real difficulties with this kind of procedure/investigation.

I got a letter through asking me to attend the gynae clinic at LRI on at 9 o'clock one morning in April. When I attended, myself and the other women who were there were told that we had to go home as there was no consultant in attendance. The nurse said there was never meant to be a clinic. When we attempted to book onto a further clinic we were told that the next one was not just full but over full and they could not book us onto the one after that. This would have taken us over the 18 week referral to treatment window anyway. I complained to PALS and got a standard reply that they would look into it. I was not replied to within the ten day window and had to put in another complaint. Eventually I got a phone call from someone. He simply apologised.

After rather publicly complaining about the situation I got a phone call one Tuesday asking if I could attend a clinic that Friday. Luckily I was able to do this. I saw a Doctor who was very nice but had not read my notes at all and the appointment was perfunctory to say the least. They suggested further investigations which were an internal scan, a hysteroscopy and when asked by me, they agreed to do my smear, which was then due.

I received a letter early May. It was a standard form letter for a hysteroscopy appointment a month later, with the blanks filled in with pen. I was given the name of my consultant but I cannot find a consultant of that name, or any name similar working at UHL, and I tried because I wanted to speak to staff before the procedure. I did ring the number at the bottom of the letter but it said: 'This phone line cannot be answered due to staffing shortages. Leave your details and someone will get back to you.' I did that. I still have not received a call.

I was concerned about the letter because the language it used was evasive. It suggested that my pain may be managed with paracetamol but that I might like to have someone drive me home after the procedure. I wanted further information as my reading on this procedure showed some women experience extreme pain. I note also that the NHS Choices website says that you can ask for a general anaesthetic but UHL literature does not mention this. The more people I spoke to, the more concerned I got, as my past history does not suggest that this is a procedure I will tolerate. However, I was unable to get anyone from UHL to talk to me about it.

I went to see my GP. I saw a locum who had not read my notes, knew nothing about the procedure and proceeded to tell me that she 'thought' I would be 'fine' because she sometimes puts coils in for people and they don't have a problem with it. I asked her for some diazepam so that I could be as relaxed as possible for the procedure. She was rather rude, but gave me 2mg of Diazepam to get through it. I also saw a hypnotherapist before the appointment to give myself the best possible chance of getting through it.

In the meantime I had put out a call in my patient panel role to ask women in Leicester about their hysteroscopy experiences. I spoke to about twenty women in the course of a week, of whom, only three had tolerable experiences, and of those three, two of them knew of women who had not had good experiences. I fed all this back to the UHL librarian in charge of letters and the pamphlets that go out with them, including the fact that the Royal College of Gynaecology is actually re-writing its own material to reflect more adequately the true experiences women have with this. She was very nice, but has to pass all this on to the clinical team, from whom I have heard nothing.

I got a letter regarding a transvaginal ultrasound at the LRI in early June, which I attended. I did not receive the results of this until after my hysteroscopy procedure which I attended two weeks later at the LRI.

I saw the same consultant I had seen at my clinic appointment. They were was very kind. I explained my concerns and they did give me the option not to have the procedure. I would say however, that this was not very helpful. My condition needed investigating and I would presume that nobody would give me a hysteroscopy just for fun, and if I had said no, we would be no further forward. I asked them what they recommended and was told we should give it a go, but that if I was in too much pain, we would stop. We talked about the fact that I needed a smear test as well. They said they would try that first and we went into the treatment room.

My husband was allowed to come in with me, which was very comforting. The nurse was also lovely and supportive, as was the doctor. I have no complaints about them at all.

The smear did not go well and it was unbearably painful. After a few attempts, the doctor gave up. I was told they would move on to the hysteroscopy as the camera was so thin that it would not need a speculum to be used. After several attempts to guide the camera in, they had to give up, as my cervix was so difficult to find. The doctor sent the nurse to get what I can only describe as a child sized speculum. This was inserted successfully, they did not however, do the smear at this point. I was told afterwards that they felt it was more important to focus on getting the hysteroscopy done. They proceeded to find and dilate the os, at which point my body went into shock. I started shaking uncontrollably and my legs in particular would not stay still. I then, according to my husband, went bright red all over, to his great concern. I was not able to think straight at this point, and the doctor stopped the procedure on my behalf.

Everyone very kindly waited for me to stop shaking, and then I was asked to get dressed and go back to see the doctor in their office. I felt a total failure at this point, thinking that if only I had managed to stay still for a few more minutes we would have had success. My husband tells me that while I was gone, the doctor told him that it would have taken a lot more than a few minutes to complete the procedure and that I was clearly not going to be able to tolerate it.

Back in the doctor’s office I was told they were discharge me from the gynae clinic. This is despite them also saying that the transvaginal ultrasound had shown that my uterine lining was at enlarged and that I had a fibroid in there. I was told there were no other signs that I had cancer and as such it was fine to discharge me and I should come back if I started bleeding again. They referred me to the colposcopy clinic for my smear test and said they would make notes about how difficult it is to find my cervix and how they should go about it. I didn't really question what was said at this point as I was still in shock.

I spent the rest of the day in severe pain, which painkillers barely touched.

Yesterday afternoon I got a telephone call from the matron of gynaecology who the UHL Librarian had asked if I wanted a phone call from. She had been on holiday and only just picked up my message. I spoke to a local matron of gynaecology about my concerns and personal research into this procedure. We talked through my case and she has said that she will review it, and talk it over with the chief clinical lead who is head of hysteroscopy. I said I was particularly concerned that I had been discharged. Either the bleeding and ultrasound results were concerning enough to warrant further investigation or they weren't, but why say that someone needs further tests, and then discharge them when the test is not completed? This seems barbaric and unnecessary. The whole procedure was barbaric and now, it seems, utterly unnecessary, so why was I sent for it in the first place? I am extremely unhappy at the way this entire process has been handled from beginning to end.

I am also aware, given how many women have come to me with their stories, that I received better treatment than most and that is no doubt thanks to the fact that I know who to talk to and which questions to ask. It appalls me that it was this bad for me, and it is could be much, much worse for other women.