Endometriosis specialist referrals

[Ali_B]

Hello.

I'm new on here and could do with some advice please!

Back in May I had a CT Colonography which showed an Ovarian cyst. (This was by chance as the scan was to look at my bowel). Then in July, I had an ultrasound and transvaginal ultrasound which showed a large fibroid (5.2 cm) in the middle of my uterus but they were unable to visualise the cyst or my ovaries. I asked my GP to refer me to an Endometriosis Specialist only to find at my appointment that the Gynaecologist was not an Endo specialist. After listening to my symptoms, he felt it was 50/50 if I had Endometriosis but agreed he could carry out a Diagnostic Laparoscopy. He also said he would remove any lesions if found and if necessary, remove my ovaries, unstick my bowel etc. I looked at his Consultant profile and he doesn't list Endometriosis as something he treats!!

I'm now wondering if he found Endometriosis, would he then refer me to an Endo Specialist (who is based in the same hospital as him as well as sharing an office!) who would then carry out the surgery at a later date? Of course, there is a chance, I might not have Endometriosis but I have all the symptoms and have done for many years. I had a Laparoscopy in 2008 that showed retrograde bleeding; I've had iron infusions because I bled so heavily over the years and then the Mirena was fitted in 2021. I ended up having it removed 18 months later because of the pelvic pain. I then started having bowel problems (severe constipation whereas before the coil, it was the opposite) entered Perimenopause, and had to start HRT patches. I'm 51 in January and the consultant tried to tell me to ride it out until Menopause. It was only when I pointed out I was still bleeding heavily for 12 days, that he offered the Laparoscopy. The thought of him removing adhesions (or my ovaries) fills me with fear!

Has anyone had a direct referral to a BSGC Endometriosis clinic from their GP? Or will the Gynaecologist I saw do this?!!

[BloomingMarvellous]

For goodness sake get yourself to an endospecialist and not a have a go Henry . Too many of us get " cared /treated " by those whose training is elsewhere. Would you let an electrician do your plumbing ? Nope well ..... Ask for a second opinion from an endospecialist having looked up your local BSGE centre etc and check out their records. Botched and inadequate surgery does no good long term. As for treating your bowel that requires a gastrointestinal surgeon to carry out that out in the same operation- not a gynaecologist. Be sceptical on your own behalf , why won't this man refer you to his office mate when his office mate is the specialist????

This disease is hard enough to manage and treat without those even with ill informed best intentions having a hand in the matter. Too much misinformation, outdated practices and old habits are swilling around and we need to be sure to check, self advocate and get the best care possible for ourselves. If they start to tell you it stops post menopause that isn't necessarily the case so make sure you get the relevant treatment you really need. Accessibility for care for older sufferers is hard as we no longer neatly tick the box of " affecting fertility " . Pain and excessive bleeding and the rest slide into post menopausal care which again isn't really gynae either . Too often we find ourselves into no man's land so while you can get access to proper care do and hope the rest of them catch onto issues around post menopause endocare

[Ali_B in reply to BloomingMarvellous]

Thank you! Your sentiments echo mine and I guess I just needed to hear it from someone else in the same position as myself.

[BloomingMarvellous in reply to Ali_B]

Seriously welcome 🤗 . Sometimes I go into a funk and seem to make "irrational decisions " when faced by such characters out of some mistaken belief they are nice people offering to help and that's okay . It's only when you stand back you begin to realise how mad the enterprise is and then the voices of doubt start .... Madness personified 😬😬😬

[Sunset-lady]

I agree with BloomingMarvellous don't let him "have a go". Removing endo is a skilled job - see Rebecca Malik on instagram for details. My hysterectomy was abandoned as the gynae team weren't expecting endo and said afterwards they didn't have "the skill set" to do it. I'd have an MRI first if I was you which often picks up endo; it did for me. Then you can decide if you want an operation. I'm 51 and on zoladex - i have stage 4 endo and several fibroids. I'm hoping menopause (whilst not a cure at all especially when you hear stories on here) will stop the bleeding which zoladex is helping at present x

[white61]

it sound like he’s going to remove the endo if it is present during the surgery I doubt he will refer you on to then have another surgery xx

[Ali_B]

I've been back to the GP and explained what happened at my Gynae appointment. They have agreed to refer me to an Endometriosis specialist clinic (after I told them who the consultant was) and now I just have to wait.

Thank you BloomingMarvellous for your reply (and kick up the bum)! Sunset-Lady - I wasn't offered a MRI, which was something I wanted, so hopefully I will have this done before any talk of surgery. White61 - I thought the same but had family members trying to tell me different, hence coming on here.

Thank you ladies - it only those that have been through this, that truly understand. xx

[BloomingMarvellous in reply to Ali_B]

Thank goodness 😅 and well done. I hope you get what you need. Meantime bone up on endo , try Katie Edmond's Heal Endo book and @rebeccamallick who's an endospecialist who posts great info from her practice in Brighton (UK .)

[Ali_B in reply to BloomingMarvellous]

Thank you and I will take a look.

[Cocoacupid]

hunny I was extremely lucky that I had a diagnostic lap with an endo specialist that works in the bsge clinic in my local hospital so I didn’t have to go through any other channels than my gp a lot of the gynecologists at my local hospital work in the clinic for endometriosis which is attached to my local. I would definitely 💯 seek a second opinion as if it’s endo and it’s at a severe stage you need other surgeons and specialists in the surgery with the endo consultant. Also they know what to look for. They may well do more scans and an mri to see what is what or looking at so when they go in they are more knowledgeable. It’s best to seek a second opinion as unfortunately there are others who aren’t so fortunate as me. They are told adhesions seen no endo etc when adhesions don’t just happen. They can happen for many reasons endometriosis / pelvic inflammatory disease and am sure there are a few others as well. It’s best that you have it done by endo specialist as the more surgery you have the more adhesions can come about just from that alone . Also they are always risks with surgery so I would feel confident with someone who is a specialist than not . I had severe endo with kissing ovary’s obliterated pouch of doglus endometrioma s and endo around the bowel it was also in the rectum it was deep infiltrated but the bowel part was thankfully only superficial but that did give me a lot of issues. From diagnostic to planned surgery was a years wait . It was awful waiting and six months on nearly I feel in a lot of pain and discomfort so I had a scan which showed a 5 cm cyst which is probably the endo back as the cyst was rather inflamed it’s a horrible disease to have. As others have said already seek a second opinion with someone that specialises in endo . Take care

[Ali_B in reply to Cocoacupid]

Thank you for your reply! I went to my GP yesterday and after explaining what happened at my initial Gynae appointment they have referred me to a BSGE Endometriosis clinic (I gave her the name of the consultant!). I'm sorry to hear you are suffering again after surgery - I know Endometriosis grows back and you are no doubt facing more surgery. Endo really is the gift that keeps giving! 😠

Please take care!

[Cocoacupid]

thanks hun I recommend when you get a diagnosis to ask gp to refer you to pain clinic as they take a more holistic approach and can prescribe medication for when pain is at its worst. Take care the wait for that was around six months after referral but very helpful and the pain clinic dr was from the bsge center as well so works closely with my consultant . Xx