They found endo but left it there- why?!?

Hi- I'm new here and looking for some advice/ reassurance. I have had severe pain and irregular heavy bleeding for the past 2 years and finally after tricycling pills, mirena coil (which I had allergic reaction to and ended up in hospital!) and the implant (which made things worse for me) they decided upon a laparoscopy and hysteroscopy to find out the cause. That was last Monday.

When I was consented for the op they said they would look and if they found endometriosis the. They would get rid of it unless it was on my bowel etc and I needed specialist input. I awoke from the procedure and was told they found mild endometriosis in the posterior cul de sac (behind my uterus apparently) but left it there as it was mild!!! But my symptoms are not mild so I don't understand why they would just leave it?

Is this normal? Has anyone else had this?!

I have had a wound infection and feel really low at the moment about it all. I can't live with the pain and bleeding I've had for the past 2 years.

10 Replies

  • Hi.

    I'm really sorry to hear that you are feeling low and still In pain . I recently go diagnosed with Endometriosis and Adenomyosis. I had endometriosis in the cul de sac otherwise known as Pouch of Douglas, they removed mine as my consultant was a Endometriosis specialist. I think the reason why it was not removed is because the surgeon didn't have the experience to do this. Have they explained what they are going to do about this? Do they intend to have it removed? I know that having Endo in this area can cause chronic pain back hip pelvis that radiates down the leg this is what i am sufferong from.Lindle wrote a fantastic post on this earlier today have a look further down at the post. Lindle has lot of experience with endometriosis and how to get you in contact with the right people to help you, send her a message and she will help.

    Hope this helps

    Jo x

  • Thank you for your reply. I re read my discharge letter today and apparently I have no follow up (the registrar came and spoke to me on my own about 15mins after I returned to the ward so I don't remember much) and have been discharged back to my GP. It doesn't make any sense to me and I can't believe I'd be put through all this for potentially no relief!!

    I have just changed GP and will have to make an appt to discuss with them I guess.

    Did your surgery help your symptoms? I hope so. The pain and bleeding get me down so much. Most of my pain is located in my lower right abdomen. So much so they thought it was appendicitis when it first started. It's so painful and I like to think I cope pretty well with pain!

    I will look for that article. Thank you so much

    Ju x

  • I'm really sorry to hear you are in such pain. I contacted Lindle and told her I would send you her way, Lindle has helped a lot of people get the treatment they need. I think that it is awful that this is done I can't imagine what you must be feeling to go through your laparoscopy with no relief at the end of it. I'm 5 Weeks on from my laparoscopy I'm still in pain but I was diagnosed with Adenomyosis aswell which is different to endo it grows in the uterus and can't be removed the only cure is a hysterectomy, so that could be why I'm still in pain. You shouldn't have to put up with the pain any longer this should have been treated in your laparoscopy. Stay strong and honestly message Lindle and she will get you to where you will get treatment for this

    Hope this helps

    Jo xx

  • If you were here I would hug you!! Thank you so much for your help and just replying- it means a lot. I'm

    Sorry that the only option to help with your pain is hysterectomy. That's a tough thing to be told. I would love children one day and hope all of this doesn't stop that from happening

    Sleep time for me- surgery makes you tired right?! I can barely climb stairs without full on exhaustion!!

    Ju xx

  • Oh thanks thats cheered me to know it has made a difference to you. Yes it is tough thing to be told but I'm so blessed I had my 3 kids when I was younger , god that makes me sound old I'm only 32 lol ! But anyway I have completed my family have 3 beautiful children but still a big thing to go through.

    Yeah it takes it our of you I still don't feel 100%.

    Just remember you are a endo warrior lol that's what I tell my other half. We are strong women and we all help each other.

    If you want to talk any time just message xx

  • Hi Ju

    The problem is that you will have seen a general obstetrician who will not be qualified to know if the endo in your cul-de-sac is mild or not as it is usually in the form of deep seated nodules. So are they saying you have mild nodules for instance - who knows? That would be a contradiction in terms since nodules represent long standing endo. Have you been given a rectal exam for instance - not too pleasant involving fingers up your orifices, but more useful that a diagnostic lap in that area. The pain is pretty specific to endo there - have a look at the post I put on.

    But try not to feel too low as actually you are in a good place now with your endo treatment. They would have seen if you had really extensive endo there but one small nodule could cause horrendous pain depending on what nerves it is on. They haven't meddled with it which is good news and the means are in place for you to be referred on to a specialist centre to get it expertly excised. With the right surgery you can get this treated early and have a good prognosis. This is your right so you have to be referred for this form of endo that is causing pain. You might have to wait a while but you will get proper treatment now.

    Have a look at my post on how to find a specialist and get back if you have any problems. x

  • Thank you- it's a minefield isn't it?! It's hard to be told you have 'mild' disease when the symptoms I experience are far from mild.

    I've never had a rectal exam- but nothing could be worse than putting up with this for another 2 years!!

    They really said barely anything to me- and the discharge letter is laughable in terms of information. I am phoning my new GP today to chat through with them.

    How do I find your post? I'm new to this!

    Thank you again for your help xx

  • Hi Ju - click on my username xx

  • Hi I agree that the consultant didn't have the skill to excise what he found... Firstly you need to look up your nearest endometriosis treatment centre (there is a list on the BSGE website) then check out the consultants that work there to see what feedback they have had from patients (most important) then go back to your gp and tell them that's where you would like them to refer you to!

    It IS YOUR right to choose who treats you and don't let them try to fob you off...

    The first time I asked my gp they said they couldn't do it then I found out they aren't allowed to refuse you it's your body your life your choice.

    Good luck Sharon x

  • Thank you. I started bleeding again on Tuesday and it's horrendously painful. I'm 10 days into my pill packet so shouldn't be bleeding and had stopped bleeding after my hysteroscopy. I feel like utter crap if I'm honest and I feel like my other half is getting fed up of it. I'm getting fed up of it!!

    Got an appt with my new GP next week. So will see how they are.

    Thank you so much

    Ju x

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