hysterectomy - help advice needed

[Vicvik]

Hi everyone how are you? I hope you are all doing well.

I'm here hoping someone can help me cause I feel really anxious and concerned with this matter that I've been told litt÷ to nothing about.

If it's ok I'll give you first a little bit of context. It took the NHS 7 years to diagnose me with severe endeo (I'm aware that's the time most women wait until they get their diagnose).

My endeo is extremely severe on my womb, it's also attached to my bladder ( I had at least 5 urine infections a year for the past 4 years) has also reached my colon and my left ovaries has 3 cist. And for some reason that the doctors can't explain my belly button bleeds every time I have my period.

So the first doctor who gave me the diagnose for the first time told me I had to go through a big surgery because my endeo was too far advanced. He gave me an insane amount of progesterone that I've been taking for 5 months now. This stops me from having my period completely until I get surgery, the reason for this treatment was because I've spent my last three periods at the hospital.

Now for some reason, my second appointment where I was supposed to talk about my surgery and sign all the paperwork, when I attended I talked to a different doctor. I asked him to give me all the options with the better outcome, the one that will have a lower probability of recurrence. He mentioned doing a hysterectomy would be the best choice, but that he would actually recommend not to do it. Instead he recommended to remove as much as possible, and take the risk of having a high level of recurrence.

Now, since my womb is the biggest problem in my case, I asked him to explain to me why he wouldn't recommend a hysterectomy, having in mind that he himself said it was the best solution but still won't recommend it. Made no sense to me.

The answers I got were:

A) you are too young (I'm 32) I know you said you don't want kids but you might regret it one day. (My husband had a vasectomy made two years ago because we don't want kids).

B) and I quote: "women are too emotionally attached to their wombs and when we remove them, they get depressed and cry"

That's literally the answer I got, no medical reasons behind it like: you gonna have to take tablets for the rest of your life for this and this, or you might suffer from this physical problems. And he actually signed me off for a small surgery even though I requested a hysterectomy.

I walked out of the hospital crying. I've been in so much pain, pain that has escalated exponential in the last couple of years, I'm taking so many tablets for anxiety and depression cause by the endeo, and when I finally got my appointment this is what happened.

I contacted pals and they gave me another appointment to talk about the surgery I want....with the same doctor.

And I'm afraid I won't get anything useful from him.

And that's why I'm here. I want it to ask you guys if any of you had a hysterectomy, what are the consequences from the physical health point of view.

This treatment sounds super scary, but I want to do it because I want to have a better quality of life I honestly had enough with this. And I would much appreciate to know more about it (since all the advice I get from my doctor is useless)

I also understand this is a super personal topic, so I'm extremely grateful to anyone who shares this experience.

And thanks in advance for taking your time reading this topic. I appreciate it wo much

Thank you all

Vic

[EndoSuckss]

Hi!

My understanding is that if you have a hysterectomy for endo, unless they get every last bit of endo out at the same time, there's a still a high chance of reoccurrance. So whilst you've explained you feel your womb is the problem, you've also said you have endo in quite a few places - so just having a hysterectomy won't help as the endo will still be there and grow/spread unless every last tiny bit is removed.

Excision is the gold standard treatment for endo - although it sounds like the Dr you spoke with wasn't very helpful in explaining this!

[VinoTinto]

Hi VicIt wounds perhaps like you might be good to find out if your gynaecologist is an endometriosis specialist and if not try and find one fit a second opinion. I’m curious how did they diagnose your endo? Was it through a laparoscopy? The progesterone treatment I’m told is a good way to see if the pain is caused 100% by endo or another hormonal condition because if the pain stops when taking it, then you know there’s nothing else causing the pain. I’ve also been told that removing the endometriosis is the best option. Hysterectomy is not usually the go to. I have adenomyosis and the only cure is a hysterectomy or wait for the menopause in pain! I honestly would do some reading about this so you can go back to your next appointment armed with questions. Sending you lots of love as I too have been struggling this week with lack of information following my laparoscopy and hysteroscopy last week. Xxx

[claudia_91 Moderator Endometriosis UK]

Hi there, I'm sorry you have received such mixed messages from your health care team. It could be worth reading Endometriosis UK's information pages on the different treatments available to endo patients, as this will help you to make an informed decision on your care: endometriosis-uk.org/endome...

Excision surgery and hysterectomy are both major surgeries and it's important that you feel comfortable and confident with whatever treatment you choose. Take care.

[waddingk]

Hi first off I'm sorry to hear you are having difficulty. The next thing is I had endo pretty badly 2 years ago. It was mainly in my womb but moving to other parts of my body. Like you amoung other horrible symptoms I was in constant pain. So 2 years ago I opted to have a hysterectomy and it's the best thing I have ever done! I am a bit older than you and my consultant at the time double checked I was done with having children which I was. My advise to you is if you really don't want children have the op. You will feel do much better... no pain etc. I would go through it all over again if I had to it was the right thing to do for me. Go back to your doctor and natter him to death until they do the op. Your life will be transformed. Good luck with this. I hope you get the op and feel better soon. Kaz xx