Appointment at Endo Clinic - should I attend

[Sandygirl6697]

Hi everyone.

Hope you are all feeling as well as possible.

Feeling like a fraud at the moment. I have been waiting well over a year for my first appointment at a BSGE centre (as many others have), it had been cancelled several times. I had a private consultation and MRI last September and I was diagnosed with deep infiltrating endometriosis. At the time I decided to wait for my nhs appointment with Endometriosis Centre but after this was cancelled several times I decided to take out a loan to pay for a private operation. So I had a total hysterectomy back in March, along with bowel shave, bilateral ureterolysis, excision on both USL and rectovaginal areas. I had adenomyosis also.In March 2022 I had a bilateral Salpingo Oophrectomy (spelling probably incorrect).

The operation went well and recovery wasn't too bad however the pain in my lower back remained despite this. My consultant from the private operation advised me to keep my nhs appointment as I was still having some issues following on from the operation. Gradually over the last couple of months the pain in my lower back and across the front of my pelvis has increased. I feind it hard to sit for any length of time. I am really struggling with bowel movements despite eating all the correct foods, taking laxatives, stool softeners, the works. The pains I am having are the same as previously, along with dragging and pulling sensation I had. My appointment had been rescheduled again for 4th October and I was in two minds to cancel this as it can't be endometriosis after the treatment I have had and as it has only be 6 months since surgery perhaps I should leave it and move on.

I have received a phone call today to say that they have a cancellation and can see me tomorrow. Should I go as surely I don't really have the right to go to an Endo center after having the excision and hysterectomy? Am I taking an appointment that really should go to someone else? I am worried that they will day I have wasted an appointment. Feeling so guilty 😔.

Thank you to all who take the time to read this.

💖

[Endosufferer1]

You should go, you need to see someone!!!!!!!

[Endosufferer1 in reply to Endosufferer1]

It sure is some endo left somewhere!

[Sandygirl6697 in reply to Endosufferer1]

Thank you so much for replying. I am sure that as I had such extensive surgery and excision with a very good surgeon that there shouldn’t be any Endo left but a lot of the pain and discomfort I’m feeling is the same as before and bowel symptoms are worse.

[Endosufferer1 in reply to Sandygirl6697]

Nobody's perfect at their job, whatever their reputation! Have heard a lot of women who didn't want to complain just because they had been to a well-known surgeon. That surgeon, famous or not isn't God and can't see everything. Another one who doesn't have the same title/reputation might see what's the issue!

[MrsPaddingtonBear]

Hello

Something is obviously not right. You know your body best. Go to the appointment, even just to ask questions or get advice. You are certainly NOT a fraud.

Good luck

[Sandygirl6697 in reply to MrsPaddingtonBear]

Thank you. These appointments are like gold dust and I don’t want to have taken this opportunity from someone who nosy be waiting for surgery but at the same time I know there is still something not quite right.

Xx

[Rainbow2468]

Yes keep the appointment a hysterectomy doesn't cure endometriosis.. My friend still has endometriosis and she's had a hysterectomy. I hope you get things sorted out sending you a big hug x

[Sandygirl6697 in reply to Rainbow2468]

Thank you so much part of this terrible condition I’d that it also plays with your mind. Because I’ve had treatment I feel I should be completely ok now. Oh no I hope your friend is getting the help she truly needs and deserves ♥️

[Rainbow2468 in reply to Sandygirl6697]

Thankyou she's thankfully under the care of pain management. And I understand I tried a medication for heavy bleeding but it made it worse and I was so disappointed. I'm currently trialing prostrap, they have also prescribed tibolone which I'm nervous about taking as it says it can cause bleeding in the information leaflet, so now I'm confused over whether to try it or not 😕. Plus I've just bought one of those pre payment certificates for flipping hrt.

[Sandygirl6697 in reply to Rainbow2468]

I took Tibolone alongside Zoladex and found it was ok I know we are all different but it helped with side effects of the Zoladex injection. It will take a little while to get into your system. Hopefully the postrap will help stop the bleeding. The pre payment certificate is a god send if you are taking multiple medications.

Fingers crossed the medications help you . Sending you lots of best wishes ♥️♥️

[Rainbow2468 in reply to Sandygirl6697]

Thank you so very kind it helps put my mind at rest when others share their experience, I have complex ptsd and ocd so my mind works better with more information. I too hope that you find a solution and have a better quality of life. Have a lovely evening x

[Sandygirl6697 in reply to Rainbow2468]

Reach out anytime if you need too please ♥️

[Rainbow2468 in reply to Sandygirl6697]

Thank you, you too ❤️

[Josephine75]

Please definitely go, something might have been missed or grown back. Even if it’s not endo could be cyst or something similar. Don’t feel guilty you have taken a loan out for treatment thst should have been done on NHS. Better safe than sorry. Good luck xx

[Sandygirl6697 in reply to Josephine75]

Thank you for replying the love on here keeps me strong ( well a little bit stronger ) ❤️

[Outlander27]

Go!!! Hysterectomy does not alleviate endometriosis, especially if on hrt

[Sandygirl6697]

♥️♥️

[AlexaMac]

Hi Sandy, please keep your appointment. Any pain or even discomforts should be investigated. We all at times think *l can cope* but if you do have a flair up in the future then you might have to go through the waiting list procedure again.

I wish you well soon with the answers you need

If you want to chat more l will be online most days

Alexa 🌸🌸

[Sandygirl6697 in reply to AlexaMac]

Thank you ♥️♥️

[Sandygirl6697]

Thank you to everyone that has replied to my post. You gave me the courage and strength to go to this appointment. The consultant fully validated how I am feeling but unfortunately the news was not what I expected. After having such a big surgery at the beginning of the year including a bowel shave , he has now said I will eventually need a more radical operation on my bowels. We have decided that I will try pain management for as long as possible.

If it hadn’t been for all the support I had on here I would have bottled it and cancelled my appointment .

Lots of love and thanks to you all ♥️♥️♥️

[Rainbow2468 in reply to Sandygirl6697]

I'm sorry to hear you need more treatment but glad you went to your appointment as you now have am answer at least. Sending you a big hug x

[Sandygirl6697 in reply to Rainbow2468]

❤️❤️

[AlexaMac]

Sending you my thoughts and hopes for your future, which l sincerely hope will see you with a better solution to your pain.

Thinking of you, Alexa 🌸🌸

[Sandygirl6697 in reply to AlexaMac]

Thank you as always Alexa. You give great strength to us all ❤️❤️