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Painful hysteroscopy

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I had persistent post menopausal bleeding and have had two hysteroscopies, one with anaesthetic which was without problems and one without. The latter was nothing short of brutal. The surgeon scraped cells but then said the sample wasn’t sufficient so she scraped higher up. I felt as if I had been impaled on a spear that had been thrust up to my chest. The pain was excruciating and I literally crashed out on the table. When I came to, my blood pressure was through the roof and I had to wait several hours till I was out of danger enough for my daughter to take me home. I had pain in my sternum for a week afterwards, not to mention the shock. I was so traumatised by this that the next time I had bleeding I refused to go to the doctor as he said they would need to do the procedure again. The bleeding was very heavy and in desperation I had acupuncture because a friend recommended it. I felt the bleeding stop at the first session. I had another session a week later and have not had bleeding since. That was around four years ago. I really wish I had complained but we tend not to and it seems somehow ungrateful. Personally I believe that operation should never be done without anaesthetic. Also the NHS does nothing about the bleeding, they are merely trying to establish whether it’s a symptom of uterine cancer. In all honesty, the total cost of the acupuncture was £120. I can’t imagine how much more expensive it is to do a hysteroscopy. I cannot face the thought of ever putting myself in that kind of position again. I also cannot forget the experience of that pain which was much much worse than childbirth. 

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I had an out patient Hysteroscopy/biopsy attempt on 5th December 2020. I recieved the leaflet about the procedure and recommendation of over the counter pain relief prior to arriving. I was hesitant and researched best practice guidance. There was a sense that pain was downplayed in the information so I focused on safe practice and risks beforehand.
 
The questions I raised with the consultant were based on size and type of scope in addition to type of saline used.  My potential pain was not factored in at all nor any suggestion of how I might feel. During the procedure the consultant commented that ' we have such good ladies this morning' indicating I was compliant with this barbaric procedure due to my use of mediation and relaxation techniques. This comment is shockingly inappropriate and disregards and minimises the extent of pain that women are experiencing. I yelled out in pain at the biopsy attempt and shorty afterwards the consultant ended the procedure.  
As she left the room, she asked me to get dressed and see her next door. I was in tears. The nurse started it was best to stop as my womb could risk being perforated. I was then advised that I would receive an appointment to have the procedure under a GA. I was in shock, I went home and recognised I was experiencing PTSD reactions such as flashbacks, distress and slept most of the day and the following one. I also experienced for 10 days.
 
When I was admitted for the procedure under general anaesthesia, the very same consultant was involved. I had an extremely dismissive response to my previous experience and fears and she did nothing to alleviate my concerns. In fact she frightend me with potential risks and I felt pressured to go ahead. 
Shortly after I decided against the procedure under her care. 
This is my experience of poor treatment and has created a lack of trust and confidence in the care recieved which adds to the anxiety I am feeling about my health and I remain confused about my care going forwards.
 
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Is anyone else, who has experienced a painful hysteroscopy, now fearful of having the Covid-19 vaccination due to distrust of NHS staff?

I'm struggling to find any answers to my questions about the vaccination procedure - the thought of being touched by an NHS practitioner is terrifying as a friend says that they hold your arm whilst injecting! The thought of this brings back the memories of my hysteroscopy. Do they have to hold you?

I've written down a load of questions for the vaccination procedure, but worried that my worries will just be dismissed and I'll be seen as a nuisance and staff won't have time to support me - just like the hysteroscopy.

Having therapy, but not really helping. I want the vaccine, but no idea how this will happen as I'm so frightened.

 

 

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Hi Carrie,

I wonder if you shared your concerns with your GP they could provide you with information and support - including ensuring that the vaccination is given to you in a way that avoids any distress. 

Best wishes, Helen

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Regarding a vaccine, i see no parallel to a histeroscopy procedure without anestesia.   Histeroscopy is a brutal invasion if our body that impacts a woman in a painful, sometimes degrading way.  a vaccine is a shot

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22 hours ago, HelenH said:

Hi Carrie,

I wonder if you shared your concerns with your GP they could provide you with information and support - including ensuring that the vaccination is given to you in a way that avoids any distress. 

Best wishes, Helen

Hi Helen,

I've mentioned this to the practice, they have suggested Diazepam, but this won't be possible as I have to drive there. They weren't forthcoming in replies to my queries, I still don't know if I'll held or if I'll be able to lie down to avoid falling if I faint. Same brushing off as I got with hysteroscopy queries which doesn't inspire confidence!

Take care, Carrie

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Tuesday 2nd March 2021

I am 55 years old and was referred to a rapid response ward in a Hospital in North Lanarkshire. Referred for post menopausal bleeding and pain on my left ovary.

I have to say that I found the procedure barbaric. Having gone through IVF on three occasions in my30’s, this procedure left me feeling violated and assaulted. I am now outraged that women have to go through this without adequate consultation from a specialist. If this had been given initially, I would have asked for a general anaesthetic to be administered rather than a, ‘Rapid Response’. I will now refer to this procedure as, rapid cost cutting of a consultant ergo the lack of adequate procedural operations with a specialist gynaecologist, surgeon and anaesthetist at hand.

Referred by a GP; The letter relaying my appointment to the, Rapid Procedures clinic gave no indication of what to expect from a, hysteroscopy so, I looked online. Advised to take pain killers before hand, I was apprehensive.

The last time I had a smear test it had been painful. In addition, the Sister involved in the procedure of replacing my marina coil three years before, knocked me out when she accidentally hit the cervix. Now, I was back again with the same Sister! Only, this time, I had prepared myself to stop the procedure if it became too painful.

I answered questions on my smears being up to date, explained my apprehension as the last smear had been painful. I explained that I cannot have sex due to the pain and I haven’t had children so, I am pretty tight. She reassured me and we started.

Whilst the speculum inserted posed some discomfort and the camera or scanner didn’t detect the womb lining or ovaries, as the coil was wrapped in fibroids and casting a shadow. She advised that it had been pushed down with the fibroids and wasn’t able to do it’s job right to control the endometriosis.

The Sister explained further, she would have to move the camera through the cervix and had her afternoons work cut out for her as there were a lot of fibroids. Next thing I new the coil was yanked out! This was excruciatingly painful. I asked for a sedative which she said she would give. Not sure this happened as, I didn’t feel the needle, or maybe I did, as she mopped up the blood inside and said that she was going to replace the coil. At this point I asked her to stop. I apologised for being a poor patient and not as flexible as I used to be! I also explained my anxiety prior to coming due to my last visit. On leaving I had to ask for a sanitary towel and was given no direction on how to leave the changing area.

With no aftercare advice, I went back to work. I would have preferred to take a day or two off after this procedure. With advanced warning I could have organised cover from colleagues to allow for much needed recuperation time. In hindsight this was required for physical and psychological recovery. After all, would any of us have a tooth drilled or extracted without local anaesthesia?

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Hi @Val

Thank you for sharing your difficult experience. Unfortunately your testimonial bears similarities to that of others who also felt they were not given enough information before the procedure or adequate pain relief options. 

At Patient Safety Learning, we have been working with clinicians, researchers, campaigners and of course patients to understand the barriers to safer hysteroscopy treatment so that we can call for action that will be effective in improving care. 

A few links below that may be of interest:

Improving hysteroscopy safety

Presenting my work on pain during hysteroscopy to RCOG

Through the hysteroscope: Reflections of a gynaecologist

Ministers respond to patients’ concerns about painful hysteroscopies: Northern Ireland, Scotland and Wales (February 2021)

Minister acknowledges patients’ concerns about painful hysteroscopies; but will action be taken? (January 2021)

 


 

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I attended yesterday for myosure procedure for removal of a uterine polyp.This procedure is horrendous and should not be allowed without a general anaesthetic .The pain was excruciating and the procedure had to be stopped I won’t go into the details but  I can honestly say I left there feeling traumatised and the thought of having to go back and have it done again makes me feel physically sick It should be made  100% honestly clear by the consultant  that this procedure is extremely painful and not like it’s just a period pain (it is most certainly not) it is not even close and I suffer painful periods . no woman should have to suffer pain like this I will add I have a high pain threshold but this was awful on a scale of one to ten I give this a big fat 10 for pain 

 

 

 

 

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Hello Np   - I'm very sorry to hear about the Myosure procedure.  I hope that you will feel a lot better soon and that the memory will fade.  You are absolutely not alone in experiencing severe pain and trauma during an outpatient hysteroscopic procedure .  Please, if it's any use and if you're on Facebook, the Campaign Against Painful Hysteroscopy has a private/hidden Action/Support group you'd be very welcome to join.  If you'd like to do so please send me (Katharine Tylko - one of the admin, not a medic) a FB friend request and I'll add you.  We have an anonymous patient survey if you're interested: https://docs.google.com/forms/d/e/1FAIpQLSc2XTOe81rEy7zV2ARNPECceYyE--wTtR0mA10XHIxNQVOBrw/viewform?fbclid=IwAR2OuUIFSAa_Nk5HggwX5ZB_C94k_ObKn1qJHaio1oRHMuxexcyY9nR9NsU 

 A good place to prompt your hospital to offer better pain-relief  is www.careopinion.org.uk   Here one can tell one's story anonymously and sometimes the hospital actually makes improvements.  NHS audits show that 1 in 4 outpatient hysteroscopy patients suffer severe pain. 

However, the British Society for Gynaecological Endoscopy has done its own survey of outpatient hysteroscopy and found that patients rate the care they receive from its members as 9.7/10.   So we have our work cut out to persuade them that patients are suffering unnecessary pain!  (Interestingly, some of the BSGE members only submitted a single survey response.)

     

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I have a high pain threshold and tolerance for medical procedures - I've had a termination and some other minor procedures under a local by choice. Several years ago I had severe peri-menopausal bleeding, and a scan showed a large polyp. Under local, I had the polyp removed using forceps. I would describe this as a very minor procedure, causing me next to no discomfort during or after, and with the reassurance of the biopsy. It solved my bleeding problems for around 18 months.

Then the bleeding came back. This time, rather than do a diagnostic scan, the GP decided it must be another polyp and referred me directly for a myosure. I was confused about why it wasn't the same procedure and I was put off by the information sheet - it seemed to be more like a glossy marketing brochure. But my GP said it was 'what we do now' and that the alternative might be a hysterectomy. 

During the procedure I was in so much pain, I thought I would pass out. I had to focus all my energy on not throwing up or shouting out.  I have never experienced anything like it before, including during labour. The procedure took far longer than the previous one and afterwards, I couldn't sit up for over an hour as I kept passing out. My heart rate and blood pressure were in such a state that every time the nurses left me, the alarm would go off. 

I don't know exactly what the procedure involved, but while the first op felt as though the polyp was cleanly removed, the second felt as though the whole inside of my womb was ground to bits and sucked out. Sorry to be explicit.

Until I found this site I thought I had just had a one-off bad experience. I can't honestly say that I've suffered psychologically, except that I know I won't put myself through this again - and now the bleeding is back I'm not sure what my choices are.  I'm happy for my experience to be used to inform research and patient advocacy.

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Hi Helen,  thank you for sharing your horrible experience with us. I hope that you are able to receive the care you need without fear or pain.
 

We are working closely with @Katharine Tylko and her wonderful colleagues at CAPH. They also have a FB group where women are sharing their stories too. https://m.facebook.com/story.php?story_fbid=1564972663700527&id=193342597530214


We will not stop until these significant patient safety concerns are addressed. You might find our latest blog on this issue of interest. https://www.patientsafetylearning.org/blog/minister-acknowledges-patients-concerns-about-painful-hysteroscopies-but-will-action-be-taken
 

Thanks again. Personal testimonies really help drive home the need for urgent action. Take care and best wishes, 

Helen 

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Hi HelenB

Am very sorry to hear  you had an awful HOLOGIC Myosure procedure.  Am concerned too that you weren't warned upfront that a typical pain score for Myosure is 7/10.  Please, if it's any use and if you're on Facebook we have a hidden/closed Action/Support group that you're most welcome to join.   If you'd like to do so please send me - Katharine Tylko (one of the admin, not a medic) a Facebook friend request and I'll add you to the group.  

Meanwhile, we have an ongoing anonymous 'dissatisfaction survey' of painful hysteroscopy at https://docs.google.com/forms/d/e/1FAIpQLSc2XTOe81rEy7zV2ARNPECceYyE--wTtR0mA10XHIxNQVOBrw/viewform?fbclid=IwAR2OuUIFSAa_Nk5HggwX5ZB_C94k_ObKn1qJHaio1oRHMuxexcyY9nR9NsU

We've amassed 1,500+ awful stories collected to show that excruciatingly painful outpatient hysteroscopy is not the rare occurrence that the British Society for Gynaecological Endoscopy claims. 

Sorry for ranting. 

Updates of our campaigning are at www.hysteroscopyaction.org.uk

Best wihes,

Katharine

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