So tearful - feeling like I'm making it a... - Endometriosis UK

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So tearful - feeling like I'm making it all up

Mumfordnsons profile image
3 Replies

Hi all,

Sorry that I come here to moan yet again. Everything is really getting on top of me with the whole situation. 

I feel like my consultant isn't taking me seriously. I received a letter from him on Friday outlining our past few consultations and phone calls with both him and his secretary. It makes out that I am being uncooperative and demanding. It starts off by talking about how the Minera wouldn't insert due to 'tenderness'. The nurse couldn't  even insert the specula (the local was given between 5/10 minutes to kick in), as she refused to carry on she then went off to begin procedures for it to be inserted via GA. I feel very uncertain with regards to going under just for the insertion of the mirena as I am not good with with GA. I asked for a consultation as I wanted to discuss other options, I was given an appointment 8 weeks after this date. I can't say I was happy with the length of time however I took and and left the hospital (this is down now on my record as a refusal of treatment). 

One week later in the post comes a letter stating that my appointment has been moved forward by a future 5 weeks, making it 13 weeks since my ordeal before I get to speak to the consultant. Unhappy and actually unable to make this date(which in the letter states that I said I would be on holiday for 3 weeks, which I didn't) I phone up and ask to speak to his secretary. The phone call at times became quite heated as at times I was having painful attacks and she refused to speak to my husband. All she said was that I wouldn't even be seeing my consultant and that I had refused treatment and if I was to cancel the appointment in June then I would be taken off his list, as he is very busy with them being 'such a good hospital'. I asked if I could just have a 5 minute telephone conversation with my consultant and she said she would get in contact with him and I would know it due time.

2 days later I received another letter with the same date but a later time. I then phoned and spoke to his secretary again and asked again if I could be allowed 5 minutes on a telephone speaking to him. 

2 days later my phone rings and my consultant speaks to me. However the phone call was very negative of which my consultant basically stated that I ask for non evasive treatment and this is what I am being given. However what I stated was I didn't want an operation this year!!!! He was very short and sharp on the phone and basically stated that the only offer now is the mirena under GA 'but he can't force me'.

I then receive the letter on Friday, addressed to myself and the wrong GP stating that he in fact thinks that it is a bowel issue and I have refused treatment. We were away at the weekend for my husband's 30th birthday which this letter alongside having a painful period made it an awful experience. I sent an entire day in bed with my husband having to look after our children in a hotel and no amount of painkillers would take the pain away.

This is not a lifestyle choice, I hate my life and the impact I am having upon my family. I am a rubbish mum because I am always ill. Our marriage is shocking because we have very little intimacy due to pain and my awful mood swings. I have to drag myself to work everyday and sit in pain and not do  very good job but I can not afford to take time off to recover.

I really am feeling at the bottom of a barrel and life is getting too much to cope with. I am sorry that I come to this board with this however I feel I have no where else to turn. 

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Mumfordnsons
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3 Replies
JeanOsborne profile image
JeanOsborne

Hi, I'm sorry you're having such an awful experience with your consultant. I might be an idea to ask GP if they can refer you to a different consultant.

Tboag profile image
Tboag

You really do have my sympathy, I know that feeling if being a bad mum and wife, but we must remember it's not our choice or fault, and our families do understand, try doing some things at home or low key, hopefully it will be easier now with the sun's out, a picnic in the garden or at the park, or swimming, 

As for the consultant, shame on him, these people are supposed to be professional, I would ask for a second opinion, it's your body and if you don't want a coil that's your choice, good luck and keep your chin up, 

CiCiWilliams profile image
CiCiWilliams

Hi,

Sorry to hear you've been having such problems. I too had a consultant like this. He found Endo in my first laparoscopy just over a year ago, now my pain is excruciating again and my last two visits to him has been completely humiliating. He has dismissed me, tried to make out its bowel issues... I had to go through all the bowel testing including a sigmoidoscopy. Gastro discharged me clear with a little IBS but stated my pain was still pelvic. He's now told me its muscular pain - which is ridiculous seems as I used to be a weight trainer and know what muscular pain is. And I walked out of my appointment having been sent away that I am "cured". I'm now under a different hospital area and waiting to be seen by a woman specialist. I demanded a second opinion from my doctor. Fingers crossed I get the support I need! Are you able to see if your doctor can refer you to another consultant in another area far away from the man who is treating you this way. Take care xx

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