Could cry!!

Well that gynae appt didn't go exactly how I wanted it to go, after waiting an hour to see consultant (which didn't bother me I understand they run late), she asked me how I was with the coil and said she couldn't understand how it had came out, I explained that I still bled and was in pain to which she couldn't understand either, her next question was if I wanted ablation in an outpatient appt to which I said I would prefer GA which she agreed to do so I was quite happy and feeling optimistic by then, I then thought I would tell her AGAIN that bleeding wasn't a problem I wasn't heavy it is the pain I can't deal with anymore, I mentioned also that I get a lot of pelvic pain which is mainly where my pain starts in the pelvic region on my right side (I had previous ectopic so have no tube on this side), it was then she seemed to turn into a completely different consultant and insinuated that the pains were in my head!!! To which my husband in no uncertain terms told her that he watches me go through this every month they are definitely not in my head, she then told me that from now I can't fall pregnant and she wanted me on something to stop that happening other than condoms that we us, I'm 35 yrs old I suffer with osteoarthritis in my legs and hips which means I fall a lot, I don't want anymore children is wouldnt be safe for me to go down that route, condoms are just fine for us to use because pregnancy ain't going to happen, I was quite shocked she said that, she then suggested a 3 month injection of prostap as if have to wait till July for my op....... So not only do I feel she insulted me twice she then said she'd give me a diagnostic laparoscopy with camera but if she finds anything she won't act on it and most women just come to terms with the fact nothing can be done...I feel totally upset that someone could think that I am making the pains up and think I'm not grown up enough at 35 (married with a 14yr old) to stop myself from getting pregnant!! My husband has said that he thinks we should ask for a second opinion but I'm thinking will another consultant offer me exactly what this one has, im at a total loss all I no is I can't keep doing this every month, it affects my life for 2 weeks out of the month surely this isn't normal and I shouldn't need to put up with it!! so sorry for the long message X

16 Replies

No women should be treated so badly that they cry at a consult - not being understood. I bled thru my clothes 2 weeks every month and was in bed, Before total hysterectomy. Go for 2nd opinion. The docs have consensus so they never go against another collegue. Who wants an uninterested doc operate on you?

No thanks! I would rather change hospital doc to one that will seem interested with helping out with future surgery. I would never let someone who hasnt your best interest in mind operated or help me out.

Even if you get a good second opinion - I would search for a kind, helpful hospital doc,

Honestly the more I think about it the more shocked I am x

Hello Hu, I am utterly appalled by the way your consultant treated you today. Unfortunately there are good doctors and bad doctors. My advice to you and your husband is to seek a second opinion. Do you have an understanding gp? If not find a new gp as well! Where abouts are you? And do you have an endo center near you? Was the consultant you saw today a general gyneacologist? I have had to get second and third opinions and have now got a senior endo specialist. It can take a while to find an understanding doctor please don't feel you have to make do. If I can give you any more advice pls message me. Hugs and think you guys deserve a big glass of wine!!!Xxx

I'm going to make and appt with my gp and take my husband along, I'm going to ask to be referred to a different hospital too, I just keep thinking if it was in my head why would I need to take the pain medication that I take, ooooh I'm so mad, I live in Sunderland UK, I'm not sure if we have an endo centre x x

Just had a look and yes you do have an endo center in Newcastle if that's not too far from you? Have the number if you want it or look at xx

If you could give me the number that would be fantastic, I no this might make me sound thick but what would they do x x

Call them and ask ifbyou can make appointment to see one of the consultants either privately or with a gp referral. Also explain your symptoms etc and the problems your having getting treatment. Then you and your husband go see your gp and tell him/ her to refer you to the center to see consultant. your gp you have already spoken to the center. Number is.01912825865 best of luck xx

Up since 2:30am in agony and I only took my pain meds at 12:30, more pain meds taken and it's now 4:48 and I've had no let up from the pain, I've had to come downstairs to the sofa as I'm going to wake my poor hubby up pacing the floor but no doubt when he wakes and realises im not in bed I'll get told off for not waking him up, aaaaarrrrgggghhhh I give up, I'll say what I always say "I can't keep doing this" x

You must exercise your right to see an endometriosis specialist in a Centre of Excellence. Even the NICE guidelines published by the NHS say this is where endo should be treated but GPs and gynaecologists appear to know nothing about it. Endo must NEVER be dealt with by a general gynae as they will almost always make things worse rummaging around in your pelvis not knowing what they are doing. They simply don't have the knowledge that someone operating on endo day in day out has. The list of accredited Centres of Excellence is published on the website of the British Society of Gynaecological Endoscopy at:

NHS Choices means you can see anyone you like anywhere in the country. You must exercise your right and demand a referral if necessary. When I had continuing stage 4 at age 56, years after having my uterus and ovaries removed, my GP wanted me to see another general gynaecologist, saying 'I would rather send you to someone local'. WHY if they don't have the expertise and the NHS itself advises against it? Research the specialists and then take a copy of the list with you and state quite clearly where you want a referral to. Also insist on being a part of what is written in the referral. When I first got copies of all my medical records I was devastated to see all the letters that I had handed over to specialists telling them everything was in my head.

I actually brought about the list of specialists as I had researched my condition in depth and knew I was in serious need of 'proper' care and at risk of renal failure, which turned out to be right due to obstruction of both ureters by endo, I found the website of Mr Ashwini Trehan in Yorkshire and decided he was the man for me. Afterwards I wrote to the BSGE and advised them of the plight we sufferers are in not knowing where to go and they published the list in response. There are quite a lot on it now and they will all be excellent as they have to prove their expertise by stringent means before being accredited. But Mr Trehan is pretty much regarded the best in the UK. He's pioneered several procedures and has written lots of papers. PLUS he is the loveliest man you could ever want to meet. For the first time you will feel you are in a place where you belong, where people actually know what you are going through. His website is:

Please keep us posted and if I can help further please just ask.

Linda x

Thank you so much Linda, I'm ringing my GP first think Monday morning, I've had a really bad so again plains are out the window for today x

You are so welcome. I don't think you say how old you are but hopefully young enough to get your life back. I lost so much of mine, not to mention a husband who sued me in a divorce court for unreasonablr behaviour in ruining HIS life with endometriosis!! You just couldn't make it up, could you? Anyway, well rid of him! But I've kind of vowed that with what's left of mine I want to do anything in my power to help prevent other women going through what I did. x

Hi, Amy and I had a very similar situation with a consultant at one point and it felt like we where being pushed out the door as he had a tight schedule to keep. We weren't getting any answers so I ended up paying for a private consult out of desperation to have a full conversation with him, but really didn't get any more information from him. We have gone on to fight for a second opinion, and got one. The new consultant seems to really know his stuff and is also sympathetic with the condition which is a refreshing change.

Couldn't agree more that 'just deal with it' is an answer? there isn't many other conditions in the world that this is allowed, so why should it be with Endo?

I totally agree and really couldn't believe she said that, to be honest I just wanted to get out of there cause I could feel my husband starting to lose his temper which I don't blame him for at all, he was just trying to protect me and was disgusted with the consultant x

Second. Opinion. This is not on! Where are you? Maybe others can suggest someone. Hang in there :)

I live in Sunderland, I lovely lady on here has let me no there is an endo centre in Newcastle x

Go for it :) looks fab.

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