Feeling disappointed: Hello! I finally saw... - Endometriosis UK

Endometriosis UK

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Feeling disappointed



I finally saw an endo specialist who did an ultrasound and immediately told me that I have severe endo that could be seen on ovaries, bowel and bladder even on just an ultrasound. He said that my surgery is going to be quite difficult and that he would do everything that I could have a child some day. I am 27 years old and currently single and really angry because my periods are really horrible and now I have pelvic pain all the time. I talked about this symptoms with my gyn many times, but she just said she can prescribe me some painkillers and nothing else. She never took me seriously and now I don't know if I will ever have children.

13 Replies

Hi there - sorry to hear that. I suggest to seek out a second opinion from another endometriosis specialist to discuss the options available to you. Please don't feel too disheartened, it is always helpful to hear input and opinion from a different doctor (in case they can offer you different treatment options based on their individual skill, training, and expertise). Good luck!

lotrtxt in reply to Siaoz

Thank you for your reply! I will see if I can get a different opinion because it was hard to get to this specialist in this difficult times. He said that they will also include other specialists for my bowel and bladder endo.

Sorry you’ve had this news. I think specialist centres have expert nurses you can talk to. If you have the opportunity talk to them and go through things.

It’s good you have got somewhere now and it looks like you have a consultant that cares and wants to help.

I hope you don’t have to wait too long

lotrtxt in reply to Moon_maiden

Thank you for your reply! I will definitely try to talk to one of the nurses if I can. I also finally got a feeling that somebody really knows what they are doing and not just speculating. I am angry because I actually mentioned endo as a possibility to my gyn 7 (!) years ago and she just said that some women have painful periods. I will probably find a different gyn as soon as I can because I don't trust her anymore.

Moon_maiden in reply to lotrtxt

Won’t you stay under the new one? Or do you have other stuff going on.

Doesn’t it make such a difference when they know what they are talking about.

I know how you feel about the anger. Mines not as long by any stretch, but still cross about having to go private, and they keep screwing the referrals up recently. I try to tell myself what’s done is done and I’ve gained more experience with getting things done.

lotrtxt in reply to Moon_maiden

I went private to the specialist just for this one exam because my pain is getting worse and I wanted a second opinion for endometrioma so I am technically still her patient. I feel some relief because I finally know that this is not just because I am oversensitive to pain or something similar. I just hope that the pain will go away with proper treatment.

Hidden in reply to lotrtxt

If you are getting a team including someone to help with both the bladder and bowel endometriosis, it sounds like you have found a good place to get treated, especially as they identified your endometriosis straight away.

You don't ever have to go back to that other one, your call!

Can the team transfer you to NHS now you've had a consultation? I did that years ago. And I never saw the old gynaecologist ever again.

Good luck!

lotrtxt in reply to Hidden

Thank you! They told me about the option to transfer and I will definitely do it. I am thinking about facing my old gyn just once more to tell her that maybe she should take complaints about pain more seriously. I am hoping that maybe she would then do it differently for someone else with same problems (or I am just naive).

Moon_maiden in reply to lotrtxt

Is say the same, ask for a transfer on to NHS. You’ve found someone you have confidence in. It doesn’t sound like she has the experience or wants to deal with endo.

It is up to you though.

Let us know how you get on.

I'm so sorry to hear this. In a similar awful situation as re. late diagnosis (at 31) and still waiting on surgery. Now in dealing with surgeons I've even had to fill out ridiculous forms which only summarise the symptoms, rather than allowing me to elaborate, and find doctors are very unthinking in how what they say can impact you emotionally. They talk about removing your organs which are meant to help you have children in these bizarre, cold terms. Even as a teenager when my periods were so bad I was given an ECG, nobody ever mentioned endo. I am actually very angry, and I am sure you are too.

lotrtxt in reply to Noodle31

I knew that something was really wrong for about 6 months now but I did not expect it to be this advanced. I have to do an MRI to see exactly where it is but specialist was talking about at least 3 months of waiting before they will even meet and then do the surgery. I know that a lot of surgeries were cancelled so I will have to wait some more. At least now I know what I have even if it is late. I can feel your anger and I hope that everything will be easier one day for all of us.

I’m so so sorry I have been in exactly the s

same boat so have some idea how you feel.

I was ignored my medical professionals for 13 years and was also 27 when finally diagnosed.

It’s heartbreaking and basically life changing.

If someone had listened or taken us seriously life would have been very different!

I’m glad to hear it sounds like you’ve got a good endo consultant now so don’t lose hope with regards to having children.

I couldn’t unfortunately have children but my friend also has it severely and she has had 3 and she’s a little older than me.

I’m 33 now and the pain got so bad everyday I have been signed off work since December but hoping it will subside so I can look into adopting (I know it’s not the same).

I’m still so angry and can’t forgive the doctors who ignored me and didn’t take me seriously.

I wish you the very best of luck xxx

lotrtxt in reply to Lily1986

A lot of my friends have children already and I am thinking if I would just tried to get pregnant earlier maybe I would have more chances. I know I should not be thinking like that but I just can't help it. My pain is also bad but I still try to hold on through work. Best of luck to you too!

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