Endo after hysterectomy

[Lindsey1976]

I had a total hysterectomy and removal of ovaries and tubes 4 years ago. I’m in constant severe pain. I have 8 laxido a day, still backed up. My hips are stiff. I have back/groin/leg pain. Vomiting. Bowel obstruction symptoms and so tired! Anyone familiar with this? Is it endo? How to get help when no one believes you 😭

[TennisAM]

Hey, is it the GP that doesn't believe you? It's perfectly possible it is endo as it can create its own estrogen.

I think its really important they refer you to a consultant Gastroenterologist. They should do a colonoscopy. If you're in London I can recommend one who you can ask to be referred to on the form.

Have you tried anything natural to loosen the stools?

If I were you I would put my foot down in your next appointment, say to them "if this gets worse, you and I will both be in trouble". This will indicate that you're going to sue them if necessary.

Always remember you're in charge, not them. This is your health and wellbeing and no one will care more about it than you. Be firm and you will succeed. If you are talking to them on the phone I would stand up before you say anything such as above, your voice will sound authoritative. Women sound too relaxed when seated so the change in tone should work xx

[Lindsey1976 in reply to TennisAM]

Hi, thank you for your reply. I was referred to a gastroenterologist, he wasn’t helpful and even made a comment about my weight, saying I was too fat to have anything wrong 🙄 I am 11 stone! I have seen a colorectal surgeon who suggested a colonoscopy, but I was extremely poorly after the prep, I thought I was going to die! I had a laparoscopy and the doctor (not consultant) wrote he had tried to divide extensive adhesions and nothing more could be done. Im taking 8 laxido a day and my bowel is still not able to move. My left hip is now stiff and I’m unable to open it. I’m vomiting and fatigued. Doctors are just belittling me now and saying there’s nothing can be done. I’m afraid I will very soon become bed ridden and even have a complete bowel obstruction as I already take maximum dose of laxatives and barely eat. I’m very anxious and scared right now

[TennisAM in reply to Lindsey1976]

That's awful, what a bunch of a****

Worth getting a second opinion from another surgeon. Just because that doctor said nothing more can be done, doesn't mean others aren't more skilled.

I have done a lot of research regarding natural things that work, some of which can reduce pain and also adhesions. Happy share if you send me a private message.

[Peenie123 in reply to Lindsey1976]

I had a hysterectomy 15 months ago and fear my pelvic pain is Endo. Have also in the past ( pre hysterectomy) had a colonoscopy due to family history bowel cancer) and the bowel prep process left me feeling wasted and ill - so much so that I passed out after the procedure which had me on the ceiling it was so painful. I too am pushing and have finally just been referred to a different hospital gynae dept, now waiting for contact from them. It shouldn’t be this difficult to get the help we need. Oh to be a man! My bowels certainly are different since hysterectomy and I also take Lactulose regularly- I have twisted colon do I put my blockages down to this. Take care and best wishes xxx

[Dogmad6]

I've suffered terribly with endometriosis and continue to suffer 17 years after total hysterectomy. There are more people in this situation than doctors realise. You really need to see a good endometriosis specialist, I think that is your most important thing to ask for.

A hysterectomy does not cure endometriosis.

Good luck xx

[bighug]

Hi, sorry to hear you’re suffering so much, it is hard to get people to listen and understand what you are going through, the other replies are right, try and get a second option, you definitely need more investigation into what’s causing your pain. I’m actually going through it too, I have chronic pelvic and lower back pain, I had a total hysterectomy and removal of ovaries a few years ago, and I’m now back on the painkillers, taking gabapentin and tramodol daily. I have a great gp who referred me back to my consultant, he has agreed another laparoscopy and referred me to a colorectal surgeon who’s doing a colonoscopy! I do feel they don’t get it, and they are suggesting these procedures but at the same time think there’s nothing they can do for us.

I hope you do go get that second opinion before it gets any worse and they look into it more with support and help that you need. Big hug 🤗