Just wanted to share and see if anyone else has experienced this and any advice on how you dealt with it. So I have just had a full hysterectomy after years of struggling to have a baby with no success. This was my 5th Gyne operation and the end of the road to having a biological child. So saying I was a little emotional was an understatement but I felt once in hospital I was dealing with it better than I expected. So my first night in hospital and there is a cubical opposite me where there are bringing patients in from the early pregnancy unit. So they pull the curtain round but you can hear everything about the pregnancy. I was in pain and had been asking for painkillers for over an hour. I got upset at this point and called a nurse over who said they were on the way. Then I whispered to her, not wanting to make a fuss, knowing they must be short of space but telling her my situation and saying I just wanted my medication so I could put my ear plugs in and go to sleep and not have to listen to it all. She was really kind and did this for me. Then the next day, luckily I was feeling stronger, because they bought in another chair opposite and there were 2 cubicles with the same thing again. So I just sucked it up. I just think maybe knowing my situation they could have moved me or this all could have been going on elsewhere.
As my care was reasonably good, due to the staff being stretched I didn’t feel I wanted to complain at this point.
So 4 and a half weeks on and I have an appointment at the hospital for physio. I was a little anxious but went along. They take us into a room and it’s quite clearly used for antenatal classes. There were pictures of birth all over the walls and affirmations on the flip chart. So then I lost my temper, which is quite mild compared to most people. It was a group session so I’m front of everybody I said to the physio why do they keep doing this. It’s hard enough having a hysterectomy when you can’t have children and then you have to put up with all this. Then went on to say about my experience on the ward. I told her I wasn’ t having a go at her but it’s just so insensitive. I then proceeded to burst into tears and left the room. Once in the toilet I tried to pull myself together. I then went back to the class and none of this was mentioned again.
Sorry for the long rant but basically I am now wondering if I should put in a formal complaint??
I just don’t want anyone else to have to go through this, as I find most people going through infertility tend to keep things quiet. Would like to know your thoughts. TIA xxx
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Sammylou51
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So sorry to hear sammylou, we are the forgotten people and our pain isn't accepted or validated. I suspect other groups who have "issues" or are "different" will have similar experiences,
Sounds like it was all too much and your reaction is so understandable. Will things ever change? Maybe, in time? I wonder if they're will ever be a 'ribbon' for infertility or adverts saying "see the person, not the infertility", of course that would assume we all are or want to be defined by infertility when it's probably really necessary to accept it, heal as best we can, and try to get on with our lives in some way - not blooming easy I'm sure!!!
Would I complain? As someone who works in the NHS I suspect you'll get the usual Dear John reply and nothing will change...... They may not have more space, enough staff, etc as you say
But unless and until we politely tell people that emphaty and thought are needed when dealing with a situation like yours it will never change, so yeah maybe send in a letter of "suggestion" and maybe ask if they have a patient liaison group and perhaps you could explain why your patient journey has some extra points which need considered carefully, just like lots of other patients who have additional wants or needs..... The NHS bends over backwards for most "minorities" so why not the infertile!
Hi Sammylou, I had a hysterectomy in 2011, but I didn't experience the same issues as you, which must have been extremely difficult for you? What I was astonished about was the lack of information regarding support groups such as more to life or any other kind of support as it was a gynaecological ward as if they assume that every woman who has had a hysterectomy must have already had children, only found out about.more to life from Google. I work for the NHS as well as the previous person I would agree with what she said the more people complain then maybe in time changes will take place with more sensitivity. Take care
Thank you for your reply. I have decided to send an email and hope they will take it into consideration.
Yes I also agree with you about the support. I got 1 session with the fertility clinic after failed IVF and nothing from the hospital. I also work for the NHS as a nursery nurse with the health visiting team and have to say work have been amazing and my whole team really supportive and they offered counselling but I saw a private counsellor in the end.
I guess after my 10 year journey with infertility and operations I just want something positive to come out of it and if I can help just 1 person to not go through just some of the heartache I e been through it will be worth it.
I have had similar experiences, I have had a very large cyst removed and spend a couple of days on the gynae ward and the first night a girl was put in the bed next to me with severe morning sickness and I've got to say it was severely uncomfortable to have to listen to her and her family talk about the pregnancy for most of the night. I also have to go for annual ultrasounds as they found borderline mucinous carcinoma cells in the cyst. Needless to say I sit there with a group of women at various stages of pregnancy. It is extremely unpleasant but I have never said anything about it to be honest. I just put up with the feelings that come with it mainly as it will be impossible to avoid pregnant women my whole life. It would be nice if they would take infertility into consideration but I also know they don't consider the ladies that are having a scan to find out if they have lost their baby, they also have to sit there with all the happy pregnant ladies and their situation is much more painful than mine (in my opinion).
I understand where you are coming from, it is a hard situation to be in, I try to just acknowledge how I'm feeling and deal with it. It would be hard to separate every one based on personal circumstances in the hospital I go to.
Thank you for your response. Sorry you have had to go through these hard times too.
I have suffered things like this for years and never said anything. Now I’m at the end of my journey I guess I just had enough and flipped. I have decided to send an email maybe not to complain but as a suggestion, as I feel nothing will ever be done if I keep quiet but someone may take things into consideration if I speak out. Who knows. The NHS is so stretched but I will feel better in myself if I do something. At least I will have tried. Xx
Hi Sammy Lou,
I am so sorry to hear about your operation. And at a time of such physical and emotional pain you also had to deal with the insensitivity of our Hospital systems.
I was in a similar ward in Stockport after experiencing a miscarriage following ivf treatment. I was grateful that all the people in the beds next to me were older and were in there following gyne surgery. Had I gone to the new Manchester Royal infirmary I would have had to endure being in a maternity ward. What moron thought that was a good idea when planning a new building.
A nurse told me she had written in following her painful experience being in a maternity ward following her miscarriage. Maybe the more people who write in about situations like this will make a difference. I also feel this is something for our local MPs to campaign about.
In my 8 painful years of infertility investigations, gyne consultations, operations, scans, internals, bloods, I have had to sit in wards and waiting rooms for hours watching all the excited pregnant women coming and going and surrounded by pregnancy posters. It is such a painful place to be and robs you of any strength that you may have left.
Even IVF clinics are oblivious to this pain. Despite advising patients to not bring children in, they turn a blind eye to it. I will never forget finding out we had lost our baby to have to endure walking out of the room past a couple with a child.
Our stories are not only valid, our wounds we carry from it must fuel the fight to ensure it will be easier, kinder and more sensitive for another generation having to endure this agony.
Reading your story has convinced me to write to our CCG, Hospital and MP about it. X
Thank you for your response. Just reading your reply has made me decide I’m going to do the same. So once my other half goes back to work tomorrow I am going to send the emails off.
I know our NHS is stretched but I work as a nursery nurse with the health visiting team and throughout all of my training and daily work we put the families needs first. Therefore I don’t think it would take too much for them to put a bit more thought into where they put patients/Place posters or put things away after one session to accommodate for the next and have a bit more sensitivity.
Let me know if you have any success from your emails. If more of use do it surely someone needs to listen. Xx
Hi Sammylou, good luck with sending your emails keep us posted on the forum. All the best x
Hi everyone,
I have decided to go big on this! I have created a government petition to help make our NHS hospital wards and waiting rooms across the UK infertile friendly.
Please copy and paste the below link into your browser. This will take you to the petition. It takes just 5 people to sign it to go live. 10,000 for the government to respond and 100,000 for a debate about it in parliament. Considering there are 3.5 million suffering from infertility in the UK this is possible. But only with your help and the help of your friends and family. Let's do this xxxxx
thank you for signing this. It will take a week for the government to check it and set up the official page. Till then you can copy and paste the below info and link it onto your facebook page. Also a charity has just posted it on their website so you can share this too;
There are 3.5m people affected by infertility in the UK. Yet their experience of our hospitals & surgeries only add to their grief and pain. Women who have suffered miscarriage, hysterectomies, gynae operations etc are placed in maternity wards/waiting rooms surrounded by pregnant women & babies.
This petition asks for:
• Separate rooms where women can wait for appointments away from pregnant women, babies and pregnancy poster campaigns
• Separate wards for women miscarrying their babies away from pregnant women, babies and maternity wards
• Separate rooms or wards for young women having had hysterectomies away from early pregnancy departments or maternity wards
• New legislation that means all NHS departments and GP surgeries provide safe environments for the infertile
thanks again xxx
• in reply to
sorry I think the link might take you to a signed page. copy this one;
I am a member of a few fertility groups. I will see if we can share on their websites too? Xx
Hi again, I am so pleased to say this petition has been recognised by the government and has gone live. Click this link to see the petition and start sharing it. We have just 6 months to get as many signatures as possible. Thank you x
I just wanted to say that I think your reaction is a good thing. Even if the professionals don’t change anything then it might make a few people in the class think twice before saying/doing something insensitive. We need to be more open about it all.
Hi Katybetter. Thank you for your reply. Since making my comment fuzzy_winker has set up a petition to try and improve the situation in hospitals. This week in Sheperds Bush they are holding fertility fest and I will be attending to promote the petition . Come along if you can.
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Struggling to cope
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help needed......Infertile friendly campaign
