Post op appointment after Diagnostic Lap/Hysteroscopy findings:

Good Morning lovely ladies firstly I would like to apologise for this log explanation of findings that was discussed with me yesterday

I am so angry...emotional and fed up what a day...just got back from my post op appointment at hospital to get the results of my diagnostic Lap/Hysteroscopy and low and behold I was not able to see my actual gynie consultant but one of his other consultant registrars a horrible abrupt( I think she was German) after waiting for over an hour due to her running behind it was the most awful and upsetting experience...right here goes findings

1.) severe 4/5 severe endo found in pelvis, POD back of womb the cyst was attached to the Bowel and Back of Womb so that's why he couldn't remove it and had to drain it due to severity of endo.

2.) chocolate cyst/endometrioma found significantly grown since ultrasounds from 5cm to just under 9cm which he drained.

3.) Here we go recommends a Hysterectomy and removal of both ovaries and then she said "How Does that sound my reply was "Unfortunately that won't get rid of endo her response was "Oh Yes it will removing the ovaries stops you making 6 cycles so that is the definitive treatment for reply was "it doesn't get rid of the endo that is already there does it" her response "it doesn't get rid of the scaring but the Hysterectomy with definitely get rid of the endo.

4.) Next she said hang on I'm having difficulty reading his scribbled notes god what a mess..Ovarian cysts in POD something something and behind the womb I think it reads something like bilateral cysts and there are a number of other cysts not sure what they are as they are all attached together in a large mass in the POD

5.) Both Ovaries have got Cysts in what these are not a clue did not say

6.) Right Pelvic area a cyst was present which had also grown since ultrasound findings this has been drained as to your question these cysts that were found can all fill up again yes and as to the time span of these filling up again dunno but that really doesn't matter as these will be taken out when he does a pelvic clean or with hysterectomy.

7.) Both Ovaries are severely plastered and fused to pelvic side wall

8.) POD obliterated partially so in amongst the Bowel, POD and Ovaries all matted together so he couldn't see or look down into the pocket of the womb could not perform all of hysteroscopy due to not being able to see certain things due to severe endo but full laproscopy was done.

9.) Right Fallopian tube is blocked something something and left Tube is is torted I think it says torted still can't read his atrocious writing and filled up with fluid and filled up like a balloon.

10.) The Womb itself is the size of a 16week pregnancy with Fibroids don't know what fibroids and these were left alone. He thinks they are intramural fibroid tumors. I did ask about Ademyosis and she said unless we took out your womb sent it to a lab and they cut it into sections we cannot tell... anyway this is completely irrelevant Sarah as it will be coming out with the hysterectomy and it will be tested.

11.) He has suggested a pelvic clearance to remove all cysts etc and this will stop you having periods and with you not having ovarian cycles this will keep the endo down (I'm not sure if I heard this quite right seems a bit confusing) she also said it will not remove all the stickiness I presume from the endo.

12.) He will do as little to the Bowel as it is stuck to the Pelvis and it's restrictive so we can't do anything to the ovaries so may have to leave them (confused) the more we have to operate due to the complexity of the endo the higher the risk

13.) He mentioned that he will have to do a Bowel Prep prior to hysterectomy, she told me that I will not enjoy this it's horrendous you have to take two satchets of this stuff with water etc and you will feel like your whole guts and insides will be coming out and you will be on the toilet all day OMG what the hell the advantages to this is it will reduce the risk of perforating the bowel and if this happened it would be squeaky clean and a Bowel surgeon could come and repair it & you would be alright If your Bowel was not squeaky clean the proverbial pooh would seep out into your pelvis and you would need a coloscopy bag on the outside while it was healing OMG

14.) I asked if Endo was found actually on the Bowel she said we found the Bowel was so severely stuck to the Ovaries if we remove the ovaries these will have to be peeled off the Bowel, any how Sarah at the end of the day it's not important on what we find and the in's and out's it ultimately how you feel with the severe pain you are having. This is going to be an extremely difficult and complex op which means a higher risk of complications.

15.) I asked about alternatives (didn't mention about specialist treatment I just wanted to get out) and she said I can give you some medication that will stop you having your cycles they are injections called GNRH Analogue Injections that will turn you into the menopause and will over ride the ovaries you don't have to suffer all the nasty side effects from it as I can give you a form of HRT called Tibolone which is a form of synthetic hormone this is the most effective and recommended for women with severe endo even before menopause and surgery which in turn will help alleviate the hot flushes, nights sweats and other problems.she asked when my last period was and said as I was 2 thirds through cycle she wants to start the injections with my period in about 2 weeks time so have to make appointment.

That's it basically she was very shirty was getting abrupt and lent forward and said Sarah it really doesn't matter it is really in material at this moment in time what we found treating the xray's, Ultrasounds or whatever it is the Sarah we treat...god she was so patronizing when I left I went to the toilets to have a pee and I actually threw up in the loo and got in the car and sat there in tears my poor husband was so angry and also when he came in with me

frown emoticon

Well ladies that says it all step is getting to see GP for referral to see a specialist and find out about these GNRH Analogue Injections as I haven't a clue what they do side effects or nothing same as this Tibolone..

8 Replies

  • Hi Sarah - how horrendous! Doesn't that just about sum up the attitude of so many general gynaecologists (and especially some registrars) and their ignorance and arrogance! What got me was that they aren't going to be doing anything major around your bowel due to not having the expertise yet warn you that because of their lack of expertise they are likely to damage it! It is your choice entirely whether you take the GnRH analogues but they are unlikely to have any effect on the endo you have since they don't work on pain caused by the adhesions you have or the nodules you are likely to have in your POD so I would avoid them. They are usually given before suggesting a hysterectomy to see whether that will take away your pain which of course they won't. It would have been interesting to see what her answer would have been to how exactly the medication would remove the pain from these sources. The side effects can be awful and can have long term effects. It is acknowledged that they are not appropriate for such severe endo. Thank goodness you had already got yourself clued up as you won't be going along to be butchered like many others might be with that consultant. Why, when the NHS guidelines state so clearly that this sort of endo must only be dealt with by skilled excision surgeons and colorectal surgeons, are these people still doing this? x

  • I know Lindle...onwards and upwards :) I have had an eventful few hours today..firstly I called the GP Surgery to get to see my regular GP but was told could not get to see any GP let alone my regular one until 14th July WHATTTT!!! I said it's urgent due to complexity of findings yesterday ok she said I'll have a word with the doctor on duty and get her to phone you this morning....ok I asked who it was who would be calling yeyyyyyy it was my regular doc who has the majority of the time been sorting all my problems out referals etc. She called me back and I told her the findings and what happened yesterday told her about referral to see Endo specialist through BSGE and she said right OMG let's get things rolling...come and see me I have booked a double appointment due to complexity on 11th June come with as much info you have and I will get in contact with hospital get his findings report sent over ASAP leave it with me and see you on 11th. I have also made an private consultation appointment this morning to see an Endo Specialist off the BSGE website to talk with him about the findings etc and see if he can help that is on Sat 13th June I really don't mind paying for this...I can then get some indication what the best thing and advice is while my GP get the ball rolling I have told her everything and she is working with me to find the best way of making me better and getting me hopefully pain free... so feeling much more happier after the horrendous day I experienced yesterday :) I will not be taking the injections (GNRH) or the Tibolone as I have been looking into them and it's frightening and on your advice if it's only due to hysterectomy then I will leave well again. The pain is the most intense when on period so leading up, while on period and a few days after I can put up with the pain, I really don't want to go through the hassle of having ovaries switched off so I have no period like she explained...Thankyou once again you wonderful lady for your help <3 xx

  • Bless you. Would you be happy to pm me the name of the centre you are going to privately as they do vary with some seemingly classed as 'the best'.

  • If it helps my referral to the Birmingham Endo Centre was made on May 23rd and today I got an appointment for August 4th, not as bad as I was expecting so I would expect the other BCGE centres to be similar timescales.

  • Saw GP to discuss referral to endo specialist I have made a separate post on this as to how it went....But we collated our reports that we had after my post op appointment and this is a copy of report summary from my consultant to GP... this is quite concerning to on this would be appreciated

    I saw this lady when admitted for diagnostic Lap/hysteroscopy. The Cervix was extremely stenosed & on entry into the uterus I could not clearly identify the endometrium. I saw a uterine septum with fibrosis. Lap revealed a frozen pelvis ,severe stage 4 endo, both ovaries were kissing in the middle, the left ovary particularly had a edometrioma which had grown significantly from original ultrasound findings from 5cm-9cm this I drained. Both fallopian tubes looked distorted with hydrosalpinx in the right tube. The uterus had fibroids and was enlarged to the equivalent of 16wk pregnancy. There was some bleeding around the right ovary and this was controlled with bipolar diathermy. overall conclusion this lady will need a total abdominal hysterectomy and BSO to solve her severe pelvic pain... I will brief her at post op appointment and arrange for this to be done...

  • I can't say much but I can help with this one:

    13.) He mentioned that he will have to do a Bowel Prep prior to hysterectomy, she told me that I will not enjoy this it's horrendous you have to take two sachets of this stuff with water etc and you will feel like your whole guts and insides will be coming out and you will be on the toilet all day

    I had the joy of a barium enema earlier this year and had to do the bowel prep; it is not as bad as you think it will be ( I read up loads and a friend had a colonoscopy a while back gave me some tips). For a few days I had a low residue diet, chicken, potatoes, pasta, boring but makes the prep easier. Then on the day before the BE I did the bowel prep. Mine was Picolax which is a fizzy lemon flavoured drink. I used fridge cold water and necked it. The instructions say it can take a couple of hours to work but I found it worked in about 20 mins. I had to take a dose in the morning and another later in the day and my BE was the following afternoon. What I want you to know is:

    1. There is no pain so it's not like when you get a stomach bug and your stomach feels like it's gonna explode.

    2. It is effective. You won't hang on so when you need to go get there quickly! We only have an upstairs bathroom so I watched TV upstairs for the first couple of hours after each sachet which was when I went the most.

    3. As you have had a low residue diet it does come out fairly watery from the start.

    4. Using baby wipes rather than loo roll helps avoid chafing. Also use a cotton bud or loo roll to put some Vaseline or Germolene on to soothe the area!

    5. You will be in the loo a lot! Get a book or take your tablet in.

    6. You have to drink plenty to prevent dehydration - sports drinks are ideal for this.

    7. Every time you drink you will need to go soon after as the laxatives pull water into the bowel to make you go!

    8. By the end of the second sachet's effectiveness I was honestly just passing water which was weird and a bit gross.

    9. Don't drink for quite a while before a car journey to the hospital as I found on the morning of my BE I had to drink which then led to it all coming out! Luckily my appointment was PM.

    I hope this puts your mind at rest a bit. Best of luck!

  • Thanks sooo much Mindstorm that is really helpful I can clearly say I was crapping myself excuse the pun :) not sure at this moment in time as to whether I need one it's early days and I'm in the process of getting the ball rolling with my GP about referral to see Endo specialist....I will keep all the amazing info in my folder I'm like a solicitor I have my own case file accumulating lots of evidence and help re Endo etc lol

  • Following on from Lindle's posts and crap service at my local hospital I went to my GP with the Endo Centre List and the details about patient choice and said "I want to go here" and gave the GP the highlighted centre. She read the paper, asked me about why and said yes she would refer me. I was expecting more of a fight hence having the Patient Choices and knowing the name of the right person at the local CCG (friend of a friend) in case I needed to push it.

    I got the impression the GP didn't know about Endo Centres and it took ages for the secretary to do the referral as she was unsure how to do it and who to do it to but there was no bother about me wanting a second opinion. In fact GP said it was my choice.

    I am on a long road with abdo pain from November last year and was initially pushed into seeing bowel Drs, hence the joy of the BE, and my consultant for that was horrible and made me feel like a kid making up a bellyache to get out of PE. He even told me I will probably never stop the pain as he can't make out where it is coming from. I made my husband come to my last appointment and he was less than impressed at the Drs tone and attitude.

    Luckily I had an experienced GP who sent me for an ultrasound where I lucked out and got an experienced operator who was training a newbie who found a probable adenomyoma and a polycystic ovary which led to a gynae saying I probably have endo as well (plus brushing off the cysts and claiming the adeno cannot cause the type of pain I get, research tells me this is untrue!) which has led me here and, hopefully, to a specialist who knows what is going on!

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