unhelpful consultation

[Paigeyb]

hi everyone. I’ve never posted before, but I am very upset following a consultation with somebody who will be doing my laparoscopy. I’ve have suspected endo and confirmed cysts, lots of pain etc.

I didn’t know I had cysts until an emergency hospital visit because I was in horrific pain, shaking and couldn’t move. The doctor in A&E said I had a lot of cysts, some quite large. He said he would usually refer me to somebody, but as I was already waiting for my gynae appointment there wouldn’t be much point, and instead asked my GP to chase up the referral.

In the consultation today. I explained my full history (lots of bleeding, pain, and then explained the hospital visit and cysts). The consultant said to me “well if they were bad they’d have done a referral for you so they probably aren’t bad. I was so shocked. She then said the pill or coil was my only option, I asked if I could make any lifestyle changes to help all of my issues e.g. diet and exercise and she said no, these things have no impact on endometriosis or cysts.

I feel so deflated and shrugged off. I’ve read online that lifestyle changes can help but I am lost with it. Is she right? Is there anywhere else I can go for support?

thank you if you’ve read this far.

[MRBO]

hey there,

I am so sorry to hear about your experience and that you’re in a lot of pain. I don’t have the answer for you exactly however I can share my experience which may help. I also have a chocolate cyst on my ovaries which is very large. I was given three options my my gynae (who was also not good) those choices were:

1. Do nothing. - the cyst will continue to grow but currently pain is minimal so basically just wait till it gets worse

2. Surgery to remove the cyst - I’ve heard mixed experiences about surgery and sometimes they can solve the issue but other times they can create more issues.

3. Take a drug called Zalkya which may or may not shrink the size of the cyst but does have severe side effects as it’s hormonal.

Note: I’ve read the book healing endometriosis naturally and do believe things like AIP diet and lifestyle can massively help in reducing endometriosis pain however I am not sure if anything can actually shrink these types of cysts when you’ve already got them. So in terms of long term prevention and giving yourself a good shot at recovery I think diet and lifestyle can be the best thing, but short term if you’re in a lot of pain medicines or surgery might be the best option especially if you’ve already got a cyst like we do.

Now one thing to bear in mind is that your surgeon should be BSGE certified as these surgeons deal with Endo on a daily basis and are very highly qualified. So if you can get a referral to one of these surgeons that would definitely make me feel more confident that you’re getting the best care possible.

[Paigeyb in reply to MRBO]

Oh thank you very much!

I will definitely check if the consultant has that certification, I never knew to look for anything like that.

I’m going to buy that book immediately as well 😊 thank you.

She also said she wants to put me on progesterone only pill for the endo, but have no info about it. So I may book with my GP to discuss that… it’s all just very deflating!

Why is it that with these issues we all have to do so much research ourselves?

Thank you for responding 🩷

[MRBO in reply to Paigeyb]

Gosh I totally feel you! I feel like I could do a doctors job better than them at times it’s so frustrating! I’ve just read in the book I mentioned that she said bio identical progesterone cream is very good at treating endometriosis and has no side effects, it was prescribed by doctors in the U.K. in the 60’s and for some reason isn’t now. However I believe you can buy it yourself. Read the book (also on Amazon audible!!) and let me know what you think. Ps she can be quite negative about surgery so don’t let that get you down, but it’s good to be as aware as possible before making any big desisions.

[Moon_maiden]

Hi

So sorry the consultation went that way. Was it an actual consultant or registrar and are they specialist or knowledgeable with Endo. It beggars belief that the pain levels are still dismissed.

Lifestyle issues such as anti inflammatory diets do make a difference with some, not everyone but worth a try. If you search on the forum you’ll find lots of posts about it.

If your hospital has an app or online login you should find the A&E report there but it might only show docs from the time you register, otherwise you can request all your records including the consultation.

You can put in a complaint with PALS or talk to GP about how badly it went and serif they’ll contact the consultant. If it was a registrar you saw contact the consultants secretary with a complaint and ask to talk to the consultant asap.

You can definitely request an op if that’s the direction you want, if you have fertility concerns you definitely need to talk to another consultant.

Not sure if this helps, but you are stronger than you possibly think right now, please don’t get too down about the meeting there are things you can do. 🙂

[Paigeyb in reply to Moon_maiden]

Thank you so much for your response. The person I saw is the consultant who would be doing my surgery. It was an NHS referral that was sent through to a Private company to deal with, and there are no other consultants available with them currently so unfortunately I cannot switch.

I think I will go through with the surgery and then try to research the natural options myself. She wants to put me on a progesterone only pill, but again didn’t really explain anything about it so I may try to speak to my GP as you suggested. Thank you again 🩷

[Moon_maiden in reply to Paigeyb]

I use sites like researchgate to check if they’ve written papers/research, can be handy in understanding their expertise.

Loads of consultants recommended meds like progesterone, GP did for me at one time after fibroids were seen on scan.

There is a lady called Jessica she has podcasts on anti inflammatory and dietary advice for Endo, completed lots of training.

You probably won’t have to wait too long for surgery.

Hope you’re managing to keep pain under control today.

[Poppykins86]

Hello, I'm so sorry about your horrible experience. Unfortunately, it's a common experience, but, there are definitely things which can help that you can do yourself!My experience was similar to yours, always had pain initially & then shivers & ended up in a&e where I was told it was 'probably an infection'. Then later a scan revealed endometrioma.

First laproscopy was done by a surgeon who was not an endo specialist, he didn't even bother to remove the endometrioma! Or take tissue samples, just said, yep - it's endo.

Symptoms worsened, ended up having a second surgery within 12 months & pain symptoms are so much better. Still have irregular bleeding sometimes, but the pain picture improved. This surgeon wasn't an endo specialist either.....so there is a deep implant on my ligament still there that I can't face surgery for, But - symptoms are well managed.

Diet & lifestyle are hugely important, the more you can do to reduce your own inflammatory load the better. I eat organic or grass fed where possible. I found out through trying a low fodmap diet I am intolerant to Fructan, so no more garlic & onions, but my bloat symptoms (which triggered flares) just don't happen daily no more. A mediterranean diet has been shown to be really beneficial. Exercise & stress management have been game changers. My flares happen when my stress is high from work. Try & prioritise you.

If you don't like the surgeon (or if they are a general gynae without endo specialism, use your right to choose on nhs & find another one.) Might save you going through recovery twice.

Good luck, keep us posted. Its such a hard condition to navigate, but things can help. It's so individual so it's trial & error but worth a try xxx

[Marcia71]

you don’t want surgery with just a general gynae as this person sounds like they are as they don’t understand endo. It gets complicated but basically you need someone trained in endo. This is called special interest jn endo. Should it be severe endo then you need referring to a bsge specialist centre. These are different to a gynae being bsge certified - the latter just means they have joined the organisation. It’s like a professional membership and open to any gynae. It’s only the centres that have the endo specialists working at. If you want more help for please drop me a message as I can guide you on treatment pathway.