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Endometriosis UK
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State of shock

So please I found this forum and no doubt many of the threads and post will help on the road to recovery or managing any remaining condition.

Sitting in bed in a mild state of shock and very angry with my uninformed, unsympathetic and unsupportive GP.

I was omitted into hospital 2 weeks ago (after an 18 month long wait from referral) for an elective removal of uterus due to fibroids and heavy periods, hoping to keep my ovaries etc. I'd had to push my GP hard to get a referral for a hysterectomy. Now recovering from complete hysterectomy including both ovaries, fallopian tubes and cervix. Repairs to lower colon, bladder due to adhesion and lesions caused by endometriosis and facing immediate menopause.

At this point I need answers from my consultant as I haven't spoken to him personally since before the operation when we discussed the options and keeping all healthy organs. I'd like to know how extensive my endometriosis was and how necessary it was to remove everything including my cervix and whether a speedier diagnosis would have saved anything. I see my consultant in 5 weeks time, it seems like a long time to wait to get the full picture but I appreciate it is a suitable time for healing.

I had a hunch it was endometriosis: the years of period pain, abdominal pain, pain with digestion and bowel movements, and more recently chronic pain side splitting and back pain every night when lying down. My lovely husband listened to a radio programme 4 weeks ago and remarked on all similarities.

My GP has been totally unsupportive during my years of pain even suggesting to other members of the practice that my condition wasn't serious and I was a time/budget waster. I had to keep on and on and on just to be taken seriously.

I think I need to tackle a GP change when I feel stronger as I appreciate this may not be the end of my journey and I'll need full support for the bowel pain I am experiencing and menopause I may experience going forward.

I suggested endometriosis to my GP on several occasions with no response. She seemed happy for me to believe it was whatever I wanted to believe as long as it didn't eat into a budget.

Apologies for the rant. I just needed to help this off my chest.

4 Replies

I think you need to not only change GPs but also raise a complaint with your original one. They have really let you down I think. You may think that complaining to your GP won't help but it may make them less likely to be so careless with someone else in future.

I went to the GP between the ages of 15 and 21 with my symptoms only to be told it's 'how some women are unfortunately'. I was diagnosed with stage 4 endo at 33 after paying for a private scan when I became convinced that there was something wrong.

When you're feeling up to it I would write to your GP about what's happened. They will get to know of course from the hospital but they should also hear about the impact on you. The more the GPs hear about endo the less likely they are to miss the obvious signs xxx

1 like

Hi Janine

Thank you so much for the speedy reply really helps when feeling so lonely.

We had no option but to call my GP out last week just after release from hospital. I was suffering from post op urinary infection and bleeding. She's now seems very keen to deal with me personally and arrived at my bedside very quickly. My rather sceptical husband suggests the speed in response and care shown st this time is to close me down and damage limitation rather than anything conciliatory.

I do need to follow up with an appointment this week but my relationship with my GP is a real barrier and causing me to fret already about the whole thing. I might try to book with one of the other GPs at the surgery to deal with the here and now post op complications.

As soon as I know more from the consultant about my operation and any ongoing endometriosis then I'll feel more equipped to have a positive conversation with my GP or at least someone else at the practice.

I agree there are lessons to be learned and hopefully they'll be rather more enlightened and sympathetic with the next sufferer.

1 like

I really feel for you. I am in the same place as you but after a slightly longer journey, that I wish I had never started!

Initially diagnosed with endo, coupled with awful ovulation pain and severe pmt. Having never tolerated contraceptive pills, merena coils etc and after several tests of temporary menopause I had my ovaries removed. Struggled with all but Estrogen only HRT so now have had a full hysterectomy. (we 7 of recovery). Ovaries and uterus healthy. Had to have hysterectomy as without progesterone there was a risk of uterine cancer. . If i still had my ovaries I wouldn't have needed the hysterectomy..... Still don't know why I had my ovaries removed!!!!!

In terms of recovery, I'm still not right 7 weeks in and occasionally get bowel, bladder and side pain. Been reassured that this is normal recovery, especially if they have to fiddle with your bowels.

I had to fight for a consultant appt. 4 months post op! Not that I particularly want anyone to check out my new undercarriage, but no one has checked me out or felt the need to. (had TVH)

I'm really not sure why it is so hard to get answers, but you just need to keep at it and don't get too defeated.

All the best for your recovery Xxx

1 like

Thanks BBBHO

You story sounds very famliar, I think I may have escaped some of the earlier procedures in blissful but painful ignorance. I was told by my first GP that I was just unlucky experiencing severe period pain and ovulation pain, passing out with pain has been barometer in our family. My sisters and mum did too, so we just accepted it. Bowel pain kicked in just after my son was born (I now know how lucky I am to have had him) and side pain after c-section with my daughter 10 years ago (another little miracle). I had severe sickness with both pregnancies resulting in hospitalisation with the second. So hormones I guess are in overdrive.

I have pursuaded my consultant if his registrar to see me on Monday next week as I didn't get any detailed answers after my surgery other than that I had adhesions to bowel, rectum etc and lesions, multiple scar sites so they took everything out. I'll ask specifically about the ovaries and my cervix, I quite liked having one of those. Trying to stay positive until then and get armed with some information to move forward. My stomach is bloated, hard and painful to touch and bowel movements and bladder release are a white knuckle ride.

Reading a US site hystersisters, I believe I am in the last hormonal rush before the fall off. There are some funny anecdotes on that site and some very intimate conversations that answers lots of queries I have and may not be bold enough to ask the consultant.

I really appreciate your reply. I'd be very interested in your experience with HRT as I will need to think about it very soon. I understand I may need to be careful if there is any residual endometriosis?


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