One step back again...incredibly frustrated - Endometriosis UK

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One step back again...incredibly frustrated

PBGV24 profile image
13 Replies

Hello all.

I saw a consultant in September for a diagnostic laparoscopy and coil insertion. However, because I work in the hospital I opted to have it done somewhere different.

3 months later I was accepted at another hospital by a consultant who agreed to do the lap. Which is due on Friday.

However, I’ve had a call this morning saying the consultant no longer wants to do the lap. Will still insert the coil under G/A (I find examinations excruciating) but will maybe do the lap in 6 months time. She wants to see if the coil helps my symptoms.

I am gutted and feel so disappointed. All I want is a diagnosis. I’ve been on so many methods of contraceptives and hormones I don’t know how changing will help my symptoms. Started off on the pill, been on so many types now the Depo. It’s so frustrating I feel like I just going back a step. All I want is a diagnosis. I want to know if it’s Gynae or not. If it’s endo or not.

Why are people making it so difficult?

13 Replies
JulesUK profile image
JulesUK

Are you able to engage in communication with them and discuss it? It’s all very well her saying she wants to wait but it’s your body how about what you want.

PBGV24 profile image
PBGV24 in reply to JulesUK

Think it’s sadly too late now. I have no way to contact only on the day.

JulesUK profile image
JulesUK in reply to PBGV24

sorry to hear that. To comment on a few points made here. Scans can often help and show a great deal … sometimes not. The only way you’ll now 100% is with a lap. Secondly I had the coil 10 years ago. Before that I was at rock bottom in every area of my life that had been affected by endo. The coil completely changed my life and it was the best decision I ever made. I say this not because I think your consultant was right to go back on what she agreed, I still feel a lap will give you the full picture, but in my opinion the coil has not masked my symptoms as mentioned by someone else, it has stopped them in their tracks and given me my life back.

PBGV24 profile image
PBGV24 in reply to JulesUK

Thank you for the positive reply! I’m hoping having the coil put it will help in that way also x

Avourneen profile image
Avourneen

You should not be having a "diagnostic" lap. It's really simple to get a diagnosis via a good scan either TV ultrasound or MRI. The lap will cause internal scarring and it is really invasive and it is not needed for a diagnosis. Any gynae who is in any way professional will ask you to get a scan before moving on to a lap. Then they can see where and how bad the endo is before they operate. Doing a diagnostic lap without a scan is not just out of date as an idea it is really bad practice. If you end up having to have several ops over the years then surgeons will refuse to treat you if you are too scarred internally. I have only had two ops and need another but the last durgeon made such a mess no one will operate now.

Your best bet is to go for a scan privately with a really specialist sonographer. I did this it took two weeks to get an appt, then I had a scan with a sonographer who is also a gynae surgeon. He went through my results there and then and gave me 30 mins to ask questions. The scan and full report were sent to my GP ,myself and my surgeon the next day.It cost 400pounds but it was so worth it. yOu can find out excatly where the endo is , how bad it is etc very quickly then get a referral if you need surgery and just have one op not two.

The coil or POP will hopefully stop your periods but it won't stop the endo growing it just masks the symptoms temporarily.I think this is a massive mistake the NHS are making paying for two separate ops to save money on a scan, I'm certain the two ops end up much more expensive. If you are going to undergoe a general anaesthetic and be opened up it makes much more sense to do it for actual treatment not jsut to "have a look around" an MRI often picks up things like adenomysiosis more effectively than a lap anyway.

PBGV24 profile image
PBGV24 in reply to Avourneen

well I have been on the Depo for 7 years and not had proper cycles since. Just some occasional spotting up until 2 years ago where I had a “breakthrough” period and was off work I was in agony. Since then I’ve been having endo like symptoms and pelvic pain. She’s not doing the lap anymore she wants me to have the coil for 6 months see if it’s helps my symptoms. But not sure how it’s much different from the Depo as they are both progesterone based.

Think it’s worth asking to have an MRI scan to see if it can detect anything?

KirstyMarieT profile image
KirstyMarieT

Hi.

Have you had any other attempts at diagnosis, such as scans? In my experience, I had a number of different scans, but all were unclear (bar showing a few cysts which I was told can be normal for a lot of women).

I was later offered the same as you, the diagnostic lap plus coil. I spoke with my surgeon who advised the only clear diagnosis was via lap as the stage of endo (1-4) can't always show up on imaging (shallow deposits of endo tissue wo t show on scan images for example, whereas deeper deposits will).

Speak with your surgeon,I agreed prior to my 1st op that during the lap,if endo was found, it was to be removed there and then!

Try and ensure you ha e an Endo specialist rather than a gaeny specialist. In my experience, this has made a huge difference to both my treaents and recoveries. For reference, I am 34 now, suffered with symptoms since I was 9 years old. Various treaents of co traceptive pills, taling diaries of everything, scans, MRIs, and finally surgery at 18 when I was diagnosed stage 4 endo and adenomyosis. I've since had 4 surgeries with NHS and private.

I would be happy to talk through the surgery process if you need any support. Good luck!

PBGV24 profile image
PBGV24 in reply to KirstyMarieT

I have had ultrasounds but shown nothing. Well my lap has been cancelled she doesn’t want to do it until I’ve had the coil for 6 months and see if it helps my symptoms. I have been on the Depo for 7 years which is, like the coil, a progesterone based contraceptive. So don’t know how it’ll improve my symptoms if it’s the same hormone. I just want the coil so it’s there and don’t have to keep having injections every couple of months.

I know the surgery process as I’m a nurse and I’ve seen it being done loads of times and looked after patients having laps.

Just feels like a massive step back I thought I was finally going to get some answers

KirstyMarieT profile image
KirstyMarieT in reply to PBGV24

Sorry, you did mention you worked in the hospital. I'm sorry you feel like it is a step backwards.. try looking at it that everything new is a potential step forward... if not forward, sideways. Definitely never backwards 🙂

I understand why you feel that way though, what could is treating/managing symptoms without knowing their cause?! Are you able to ask for a second opinion? I know you mentioned this is technically your second consult as you opted to move hospitals (understandably). Perhaps thats an option.

PBGV24 profile image
PBGV24 in reply to KirstyMarieT

it’s no worries!! Thank you for commenting on my post anyway. It is a good way of looking at it, sideways not backwards.

That might have to be an option. Thank you very much

me94 profile image
me94

Feel for you that your lap got cancelled. I got a lap last wed and they diagnosed endo but wasn't able to treat it. I would recommend a mri scan also. I only had an ultrasound scan done which showed a small fibriod. I'm gutted that they couldn't remove the endometriosis as I had a a deep patch and now will need to be referred to a specialist for an mri then hopefully excision surgery. I thought the gynae consultant would be able to remove whilst doing the surgery but unfortunately that didn't happen

PBGV24 profile image
PBGV24 in reply to me94

So sorry I hear that. It’s such a nightmare. I feel like nobody treats me seriously because I’m not wanting kids/in a relationship.

Hoping in the meantime I may get an MRI

me94 profile image
me94 in reply to PBGV24

I know the feeling. Try and stay positive. Hopefully they can do something for you

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