What do I do...feeling frustrated to lack of info from gynie discharge letter to GP

I need some advise I went to see GP today as had infection in belly button and needed some anti b's as had diagnostic laproscopy on fri. I asked if she had a letter from my consultant about the findings as I saw him on his rounds for all of 10-15mins and spouted off a quick brief report on his findings. This is what he wrote:

Saw this lady after being referred by this surgery with severe pelvic and abdo pain and suffering with extremely heavy periods. patient had diagnostic lap and hysteroscopy and drainage of endometrioma cyst and other cysts, fibroids and grade 4/5 endo visualised, cyst could not be removed as attached to bowel and back of womb and that's it....

That is know where near what was mentioned to me after surgery he mentioned a hysterectomy and said the endo was over bladder and other reproductive organs. I am scheduled to see him or one of his team on 2nd June to discuss findings and next steps....how on earth am I able to ask questions on that lousy report even the GP said that doesn't say hardly anything, she couldn't really comment as she is not an endo specialist. she said I need to get more clarity as to the exact findings...can anyone suggest what I can do....I don't want to start ringing around Endo specialist clinics as the info I have is really vague. I am still experiencing severe pelvic and abdo pain but I suppose it is only 6 days ago that I had invasive diagnostic lap with 6 incisions and hysteroscopy with double biopsy also I'm experiencing a very heavy painful period with huge clots the size of 2p pieces...spoke to the GP about it and she said that was normal most probably your normal difficult periods with the extra problem of having invasive diagnostic surgery....she said if it hasn't settled down and your periods haven't subsided come back and see me....feeling really low at the moment .

3 Replies

  • Hi, I'm sorry you're still in pain. Unfortunately as this was only a diagnostic lap your probably are experiencing your usual pain plus more now due to the surgery 😞. I am surprised that you had 6 incision sites. I only had 3 after major excision of endo and a hysterectomy which took almost 7 hours!

    I was just wondering whether it was a BSGE accredited endo centre that you had your diagnostic lap with? If so, it may be that the surgeon will want a colorectal surgeon present to undertake a thorough excision of your endo at a later date. Unfortunately it is not unusual for consultants letters/records, in fact NHS records in general to be concise to the point whereby it doesn't sometimes give the full picture (I have previously worked in the NHS for a number of years so have experiencd this first hand!). Apparently this is done for a number of legal reasons!

    On the other hand if your surgery was not done by a BSGE accredited endo centre given you now have a diagnosis of severe endo you would be wise to obtain a copy of the surgeons report and ask for another referral to such a centre. Severe endo really needs to be dealt with by an endo specialist.

    I am also wondering why the specialist you saw mentiond hysterectomy? Is it for the endo or fibroids? Either way a hysterectomy is not usually necessary as hysterectomy does not cure endo, especially if endo is present on other non-reproductive parts of the body. Furthermore, it is possible in a lot of cases to remove fibroids without the need for hysterectomy. Do you know what the double biopsy was for?

    Best wishes, Jo x

  • Hi Jo,

    Thanks for your reply ;) I had 1 incision in the belly button, 1 across from belly button on right side of abdo and 1 lower pelvis just above my pubic line also on right side. I then had 1 left hand side across and up from belly button sort of middle left side abdomen and 1 very low down left side pubic area and then a slightly bigger incision was the left hand side between the top of the pubic hair line and sort of going towards to hip :( it's quite hard to explain without pikkies. The pain that I have been experiencing is from the just over 8cm cyst in left side of lower pelvic area to just up to lower left side abdomen and spreading across to middle of abdomen...like you I also have been getting sharp stabbing pains in my rectum and what felt like pins and needles...I know I was quite surprised with the amount of cuts, I did ask him and he said it was difficult to see the cysts, fibriods etc because of the endo??? I had this diagnostic Lap and hysteroscopy down at an NHS hospital near Nottingham by a gynecologist/obstetrician upon referral from locum GP as an emergency as pelvic pain was getting worse... I already been sent for two types of ultrasound from my regular GP at end August. As to your question as to why 2 biopsy's were taken I asked the same question he said 1 was taken to check for endo and summat about endometrial cancer and the other was from the cyst that was drained I was very confused and my husband said he heard the same explanation. your other question about hysterectomy is was purely I think for the endo on the fact that he told me that is was due to the severity 4/5 endo...my husband & I are very perplexed as upon doing research severe endo only goes to stage 4??. I really don't think he is very adverse with endo my husband and I think...I will see what manifests when I see him hopefully on 2nd june and then take next steps after. It's looking pretty clear that I will be seeking a much more expert opinion from an endo specialist at a specialist clinic. I hope this makes things a little clearer from my post Sarah xx :)

  • Hi Sarah, Hope you feeling better.

    You mentioned endometrioma cysts and "other" cysts - did he say what the "other cysts" were? Endometriomas really should be treated by a skilled endo specialist as they need to be drained and removed (excised) carefully to avoid them spreading the disease or it growing back again in the same place because it wasn't removed properly in the first instance. In some respects he may have done you a favour leaving them alone!

    Also on a positive note is that he has done his due diligence and undertaken the biopsies. Although this can instantly make you worry it is a good thing. Unfortunately fibroids, endoemtrial polyps, endometrial cancer and adenomysos (all of which affect the uterus) can present with similar symptoms so this is why a biopsy would be needed. Sometimes the most difficult one of these to diagnose through biopsy is adenomyosis as it can be diffused throughout the uterus muscle wall and it's a bit like finding a needle in a haystack. The biopsy is so small and a healthy bit may be biopsied rather than a diseased bit. As such a diagnosis of adenomyosis can often be made based upon ruling other likely suspects out and the symptoms fitting. For reference hysterectomy is a valid treatment option for adenomyosis as currently it is the only definitive cure. Other hormonal and analgesic based medications serve only to manage the symptoms as best as possible.

    With regards to his reference to stage 5 endo this is a terminology more often used in America! Although there is still a debate within the UK as to whether there should be a stage 5.

    If the specialist is not a BSGE accredited specialist then when you speak to him in June I would ask for him to refer you to one as even the NHS guidelines recommend this course of action if severe rectovaginal endo has been diagnosed, which is the case for you. It's no disrespect to his skills, its just that severe rectovaginal endo is very complex and these centres were set up for such cases with surgeons having the necessary skills and expertise to deal with such cases accordingly.

    In case you didn't know you can find a BSGE centre at the following website and by clicking on the tab labelled "Endometriosis Centres" and then "BSGE Accredited Centres":


    You can ask to be referred to any nationwide, it doesn't have to be your nearest one. In fact I chose mine based upon good reviews and travelled 2.5 hours away (unfortunately he only sees private patients now).

    Another thing I thought might be worth mentioning considering the number of incision sites you have is to be careful of infection! Keeping them covered for too long can harbour infection as it's a nice warm place for bacteria to grow. I know it can be tempting leaving dressings on to avoid infection, especially when showering/bathing. I have found that the important thing is to keep the sites clean and dry so after I shower I dry them off using a hairdryer on a low heat setting with the dryer aimed 20-30cm away. Just a tip that has always worked well for me!

    I wish you all the best, Jo x

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