Painful hysteroscopy

I was in a real panic after reading all the negative experiences patents were having regarding pain during Hysteroscopy  procedure. I accept these women’s experiences are real and what they have experienced should not have happened. But I also wanted to share my experience today which was a good one. 
I was seen at ST James hospital Leeds. I was very anxious and nervous and  even felt nauseous and faint. The way I was feeling was mainly down to me reading online patient’s experiences regarding painful Hysteroscopy. 

I was petrified, but I was one of the lucky ones. I was greated by friendly professional staff who  put me at ease from the start. 
The Hysteroscopy Practitioner
and nurses listened to all my concerns regarding the procedure and what I had read online. They admitted some women would not be able to tolerate the procedure because of stenosis of the cervix or other medical reasons. But if this was the case the procedure would be stopped. They told me I was in control at all times. It was my body and I could stop the procedure  if experiencing pain.
The practitioner answered all my questions honestly and gave me time to make an informed decision. Even giving me options should I decide not to have it. I feel all women should be given informed choice and good practice should be shared across all NHS trusts. 

I decided to go ahead, because I felt confident that my concerns had been listened to and I could stop the procedure if needed. I was treated with respect and dignity throughout. I was continually asked if I was ok and if I had any pain. I did  experience cramp period like pain but nothing that wasn’t bearable. A polyp was removed and biopsy taken . I was told I would receive a letter with the biopsy results within 4 weeks. 
 

It saddens me to read some of the horrific stories some women have endured during this procedure. It should not be happening. Sharing good practice across all NHS trusts is essential for women to feel safe and listened to . Recording good and bad outcomes of women’s experiences during the hysteroscopy procedure is essential. I feel pain scores should also be recorded on all patients undergoing this procedure. So informed decisions can be made by professionals and patients in the future. 

 

 

 

Hi @Lorraine 2 Many thanks for sharing your positive experience of undergoing a hysteroscopy procedure.

I am very pleased to hear that you felt supported, informed and that the pain was manageable. Sharing good practice examples is vital, as you say, for improving the quality of care more broadly in this area. Routine collection of pain scores is also important, as you have also highlighted, if we are to understand the prevalence of high levels of pain. 

If you have not already seen this, the calls to action at the end of this blog may be of interest to you:

Thank you again for sharing your experience

 

On 08/02/2020 at 12:58, ShropshireJos said:

I had an horrendous outpatient hysteroscopy 

Referred after pm bleeding, having started menopause aged 36. 

Researched online before and saw some women had experienced pain. I specifically asked the dr on more than one occasion if there was a chance of pain. He said have you given birth vaginally?, I replied yes, to which he said the worst i would feel would be akin to period pain. It was barbaric, i was crying and passing out with pain.  The nurses in the room with me simply tried to chat about inane topics to distract me! Was unable to walk back to my car fir about 2 hours after as each time i stood up and began to faint again. 

I am appalled that in 21st century Britain,  the NHS is still allowing this

Here's a link to my full story https://hystericalwomen.co.uk/2019/12/11/the-most-painful-moment-of-my-life-the-national-scandal-of-barbaric-outpatient-hysteroscop

This sounds horrendous and I'm sorry you had such a terrible time. I have just come back from my own hysteroscopy and it was so painful and traumatic. I feel totally fobbed off with the whole paracetamol and ibuprofen thing. Didn't make a difference. I would say it was worse than labour for me. I was screaming and writhing around in agony and then in tears and shaking in shock. I feel when they say, might feel 'uncomfortable' or 'like mild period cramps', it is very misleading. I was so overwhelmed by the pain. It was to explore a 2 yr post menopausal bleed and looks like I still might need to do it again under a GA as she wasn't able to get all she needed from biopsy. No polyps seen though so that's good. I am Mum to a 16 year old born via emergency c section and the trauma of that experience came flooding back. Barbaric is the right word. Doctor and nurses did their best but I definitely didn't understand how painful it could potentially be. Never ever again without GA. 

On 25/07/2023 at 21:52, Carrie said:

I think that you may find that most of us who experience painful hysteroscopies do so at a NHS hospital where it is usual not to be offered any pain relief. Those of us who actually received a patient information leaflet are advised that it's just like period pain and we may want to take a couple of paracetamol prior to the procedure. Some of us have a hysteroscopy sprung on us after  having an ultrasound scan and are not even aware of what the procedure we experience actually is. 

Sadly it does all seem to come down to cost,  but it should not mean that women who can't afford private health care should suffer unduly and, who knows, may die as a result of not returning for any further treatment in the light of their painful experience. 

I totally agree. Shouldn’t matter if the procedure is paid for or not the NHS should be able to provide an adequate service. Everyone deserves to receive a   Safe and as painless as possible procedure. I have 3 daughters and would hate them to have to go through something like I’ve been hearing with you ladies 😞 

"Hysteroscopy without anaesthetic like being flayed alive" 

Hysteroscopy is in the news today. A woman from Wales describes her horrific experience of undergoing a hysteroscopy with an anaesthetic.

 

I had a hysteroscopy on Friday, 2 days ago, and like the other posts on here, found it excruciatingly painful. The staff were all lovely, I had gas and air, and had taken the recommended ibuprofen and paracetamols beforehand. None of it masked the pain, and I was very faint immediately after. The leaflet said I would be back to normal within hours, so I struggled in to work yesterday, and somehow got through the day. I had to go to bed as soon as I got home. I just wish the leaflet was a bit more honest. I felt so bad last night, that I was crying in bed! It was a relief to read these posts and realise that I am not a wimp. I had always thought I can tolerate pain well, and I've had 4 normal deliveries - but that hysteroscopy was something else.

Unfortunately, you are one of many, many women who have not given their informed consent to this procedure. I am one of them, and though my barbaric experience was in 2006, I am sorry to say thst things are only getting worse.  There is no reason whatsoever, in the 21st century, for anyone to be subjected to unnecessary pain, particularly on this level ( I passed out and was gaslighted and blamed for doing so. I was never a candidate for OPH, there were several red flags that, had anyone bothered to take a history, would have been obvious.). Pain relief was invented many decades ago, and should be given without a second thought. This torture is happening because of the arrogance and misogyny of gynaecologists, and because the NHS wants to save money. The Campaign Against Painful Hysteroscopy has collected over 5,000 horror stories, and is campaigning for women to be given the options to which they are entitled, to be given information to enable them to give informed consent. Would you consider joining us, and if you feel able, also posting your experience on Care Opinion?

Yes of course, I'd be happy to.

Excellent, thank you. Every bit of input helps.

Article in the Big issue:

 

I must have been very lucky, as my hysteroscopy was hardly even uncomfortable, despite a biopsy being taken at the same time. However, the nurse who was performing it had not been trained to remove the polyps she spotted; so I went back a few weeks later to have them removed. I was told women generally found polypectomies easier than hysteroscopies so I was not worried, and refused the gas & air that was made available to me at the start of the procedure (which did surprise me, and made me wonder why I might need it if polypectomies weren't generally painful). I found the local anaesthetic injection into the cervix surprisingly painful, but thought the pain would go after a few seconds; however, to be honest, I don't know that I felt any numbing of my cervix. However, the procedure progressed and I was surprised how uncomfortable it was. I don't know when uncomfortable tipped into pain tipped into unbearable. It was all very confused. I asked for the gas and air but I don't know that made any difference either. I tolerated it as long as I could, but I had to tell the consultant to stop and that I couldn't continue with the procedure. None of the nurses seemed at all surprised I had stopped it, and all of them (there were 4 people in the room during the procedure) said they had felt I was 'going' ie beginning to pass out. Because I'd had gas and air I was told I'd have to sit outside the door for 10 minutes before I could go. There seemed no attempt at all to check on me though so I left myself after 10 minutes. No aftercare given or suggested. I began to cry on my way home, shocked, in pain and somewhat traumatised.

So sorry to read this Cassandria.   I hope you are putting in a complaint when you feel strong enough and have all this behind you. Such a dreadful ordeal. The lack of care and empathy being shown to women in these procedures is astounding.  But what makes it worse is how they withhold information about likelihood of pain and deny access to appropriate anaesthetic and blatantly LIE TO US.  So professionally unethical!  If you haven't already have a look at the Campaign Against Painful Hysteroscopy Facebook and webpage (@HysteroscopyA on twitter ) and Care Opinion. CAPH have a pain survey already completed by over 5000 women who have had dreadful experiences. You are far from alone. Hope you feel better very soon. X

So sorry to read about your all too familiar, inexcusable experience, Cassandria. I echo everything that Ellie May has said. When you feel up to it, could I encourage you to also record your experience on Care Opinion? This is an independent organisation, unlike the NHS which marks its own homework. You can post anonymously and name the hospital, and they are unable to edit what you have written. Pardon my cynicism, but I was an NHS nurse for 37 years.

Care Opinion are great, and it’s information that’s in the public domain so most Trusts do respond. Worth it if you feel it’s right for you. 

From the Campaign Against Painful Hysteroscopy Facebook Group:

"According to NHS England's 'Getting It Right First Time' plan hysteroscopies will be done in Women's Health Hubs independent from hospitals. So what will that mean for women who'd prefer not to be awake during hysteroscopy? We need to ask NHS England."

Reading all these testimonials is both comforting and horrifying. I didn't get the procedure in UK but in France and it was the worst pain I've ever experienced in my life. And I didn't even go all the way through with it - I fainted and came back (they still didn't stop) then I had an anxiety attack. Anxiety attack manifest in full body tetany with me, so they had to stop. 

Every doctor I've talked to about it told me it would be like period cramps. What an unimaginable lie. I read someone describing it has having your something cut from within, that's what it felt like. On top of being excruciatingly painful, I felt violated. The days that followed I was in a daze and kept bursting in tears. 

The pain that followed the days after was no walk in the park, I had fainting spells, terrible cramps and feeling like someone was punching me from inside. 

It has been two months and I still cannot have intercourse without being in pain afterwards. I still have to get an appointment but they probably did some damage, I'd imagine at best some scars in the uterus. 

I would never had undergone that procedure if I had known. At least not without proper anesthesia. It is also probably because of my very understandable reaction of panic that something got damaged down there - probably from the instruments still being in me as I had my tetany attack. Any post checkup ? Of course not.

Gynecology is goddamn shame.

 

On 16/01/2023 at 19:45, Elliemay said:

Good to hear you didn't have any problems, Rainyflower - most women are ok with the procedure and it sounds as if you had a good dr for yours.  Unfortunately 1 in 3 women experience severe pain in outpatient hysteroscopy procedures, and have procedures that last a lot longer than 2 minutes.  Mine was at least 20 minutes, during which time I experienced excruciating pain, felt myself passing out as they tried to get through my cervix ( I was 20 yrs post menopause), the distension fluid for the biopsy procedure to take place felt like a red hot poker being applied to my uterus and up to my ovaries.  I wasn't advised to take any painkillers beforehand, and wasn't offered a local anaesthetic into the cervix until it was clear I was in agony.  No time was allowed for this to have any effect before they continued.  I've never experienced pain like it and I'm not alone with saying it was worse than childbirth.  Many women are left with PTSD after this barbaric treatment, often leaving women with wrecked sex lives and relationships.  This is the only endoscopy procedure where sedation with analgesia and/or general anaesthetic isn't offered as a matter of course.  Strangely, its also the only one that is a woman only procedure.  It would never happen to a man!

 

On 03/02/2023 at 11:09, EJS said:

My first experience of hysteroscopy was with a consultant gynaecologist who was trialling the use of the procedure in a theatre connected to the OPD. I had had one (thankfully very brief) previous attempt at inserting a Mirena for dreadfully heavy bleeding, when the Dr said that my cervix was stenosed. I had no previous vaginal delivery and one Caesarean section which I am told can contribute. 

 

I was fully informed about the procedure (insertion of Mirena & biopsy) by the consultant and told that I could stop it at any time if I wished. I think he must have been really generous with the local anaesthetic and I tolerated it OK although I did say in the feedback that it was the limit of what I could bear. Importantly, he told me that my cervix was really narrow and said that I might “need to go to theatre” to have it removed as “it’s probably going to be tricky to get it out”. 

 

The Mirena wasn’t a success for me but I couldn’t get anyone to take my complaints seriously. It felt uncomfortable from the outset, at a “stone in the shoe” level. I had period type cramp most days while it was in place, but the Practice nurse & GP both shrugged it off despite repeated visits. 

It didn’t solve the problem it was inserted to treat either. I swapped periods lasting a week with several unmanageable days each month, for bleeding almost continuously, stopping for an occasional but completely random day. And the discomfort....

 

Around 8 years later I ended up back in the same gynae department, being investigated for post menopausal bleeding. The coil was still in situ as the GP had finally agreed that it could remain rather than have it removed when it was no longer active. 

 

Vaginal USS had suggested that I had a uterine polyp, and I arrived at the clinic expecting to discuss next steps. I was seen by a middle grade doctor who said he wanted to try to get the polyp out there and then (on a narrow examination couch with a wall mounted angle-poise lamp so uncomfortable and awkward). There was nurse in the room but I don’t recall her doing anything apart from hovering in the background. 

 

I reported the concerns of the previous consultant re needing to have it removed in theatre but he persisted and I submitted to an attempt to perform the procedure. He tried to grab my cervix with what I now know to be a tenaculum and attempted to get through the cervix. It was excruciating. His manner was dismissive as though I was making a fuss although I had always been fine having smears/examinations in the past.  He reluctantly arranged for me to go to the Women’s Health Unit, where they did colposcopy etc, a few weeks later so that I could have a local anaesthetic. 

 

I assume the trainees need to perform a certain number of procedures during their training and I felt that he completely dismissed what I said in order to “tick one off”.

 

I was sent for another ultrasound but apparently the coil was distorting the imaging and I was told to get it removed. This ended up being in a community family planning clinic as the practice nurse had left and there weren’t suitable GP appointments available in the near future (and there was a possibility of a cancer diagnosis in the offing). Again I repeated what the consultant had said about potential difficulty in removing it. It was a female dr who seemed reassuring enough so I let her carry on. She suddenly said “1,2,3” and then repeated it. At no time had she explained that on “3” she wanted me to do anything but apparently I was expected to cough. I have a long career in nursing and have carried out hundreds of procedures/manoeuvres “on a count of 3” but she didn’t explain and simply wrenched out the coil. It did come out but it was incredibly painful, caused bleeding for several days and I needed days off work afterwards. 

 

So after a repeated scan I returned to the Women’s Health Unit. A female consultant this time who was at least a bit more sympathetic. HCA assisting was “business like” rather than reassuring. The procedure was difficult “because the cervix was so narrow!” but biopsy was done. The “polyp” had miraculously disappeared when the Mirena was removed funnily enough. The consultant was ok, and with generous anaesthetic I just about tolerated it, though she said at the end that, if I ever needed a repeat, I could have sedation. This is against a background of regular pain relief that I take for chronic conditions. 

 

After the procedure I got changed, and left the department. I have never been so glad to have my partner with me as I felt lightheaded and shaky for the rest of the day. 

 

The procedures/attempts were bad enough and I didn’t feel that I was listened to or taken seriously by any of the medical staff after the first consultant who inserted the coil. But much, much worse was the refusal to take on board the “message” that the consultant told me to pass on to future staff. All but the Family Planning clinic were part of the same trust and the first consultant was well known in the department though no longer working. As a health care professional I can usually advocate for myself; I dread to think how they treat women from other backgrounds. 

 

And as for the trainee who insisted on attempting the hysteroscopy in OPD, I hope he has changed his approach and manner. He’s probably a consultant somewhere else by now, still torturing patients. 

 

I had this procedure earlier today. I feel really low and want to cry all the time. Think it’s shock. Take paracetamol they said beforehand. No way did that cover it. The most painful procedure I have ever had and I think I have a high pain tolerance. I found the speculum insertion and internal scan painful let alone what followed. Several biopsies taken as I have a strange shaped uterus  and then a camera inserted for a look around. Once the consultant started I just wanted it over with, gritted my teeth and moaned and panted throughout. Feel sorry for the person waiting for their turn outside the procedure room.  No way would I consent for this again without any form of anaesthetic and would advise others against it too - was certainly not told I could opt out and have any other pain relief/general anaesthetic.  Horrendous experience. Never again - they’ll have to knock me out. 

I’m so sorry that you have joined the ranks of those of us who were not given the correct information about hysteroscopy, and have suffered. The lack of care, respect, honesty and professionalism is truly shocking. You may be interested in The Campaign Against Painful Hysteroscopy, which has a Facebook and web page, as well as @HysteroscopyA on Twitter. CAPH has a survey, completed by over 5,000 women,  detailing their awful experiences, and you may wish to complete one. If you feel up to it, put in a complaint. Another good way of highlighting your traumatic experience,  is to detail it on Care Opinion, which is an independent organisation that highlights people’s experiences of health care, unlike the NHS which marks its own homework. The hospital concerned will be highlighted, and you may post anonymously. Sadly, so many of us understand and are able to empathise.