First appt with gynecologist : Hi all, hope... - Endometriosis UK

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First appt with gynecologist

_Tamsin_ profile image
11 Replies

Hi all, hope you are doing okay. I want to tell you about my appt with the gynecologist and ask your opinions about it. So this is the first time I have seen a gynecologist. To cut a long story short, he wants me to try the mirena before a laporoscopy. He said that he isn't convinced I even have endo, as my ultrasound came back fine (even though the only way to properly diagnose endo is through a lap!) Which made me really frustrated because I am so sure I have endo, and if it isn't that then what on Earth is causing my pain?? After 5 A&E admissions, I was sure they would want to give me a laporoscopy and I'm a bit upset that they are STILL putting it off. So he sent me away with a leaflet about the mirena and is booking a follow up appt for 3 months. I have to get the mirena fitted by my GP within the next two weeks.

Has anyone had any luck with the mirena? What do you think about him attempting this before giving me a laporosocopy?

I feel as though he hasn't given me any choice and its like I am being forced to have it, and to be honest I really don't like the idea of it at all. The thought of having it fitted really scares me. Of course I want to get rid of the pain more than anything, but I am not really happy about being given the mirena and frustrated that he doesn't consider my situation to be bad enough for a lap. X

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_Tamsin_
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11 Replies
randres profile image
randres

You should switch gynecologists. Mine gave me the option of laporoscopic removal both times. She is phenomenal. We discussed staying on the Pill as a maintenance solution. She informed me they could and likely would grow back and we may have to do it again (which we did) but once that lap is over so is your pain - for a good two years usually. There is no possible way to diagnose without a lap. You cannot see the lesions (especially if they are in a hidden corner) and any scar tissue (which I had a goodly amount of) is not visible on an ultrasound either.

Jofus89 profile image
Jofus89

The marina is pretty good for endo but I think it's a bit off that he won't try and make a diagnosis first.

I was given the could before I was diagnosed and it wasn't a good plan at all. When my coil ran out things got worse and ended up

having an emergency lap anyway. I'd push for the lap before the coil or at least an MRI and demand it's read by an endo specialist. That's how I got diagnosed in the end because it shows up the bits that are hidden between the layers of tissue x

Impatient profile image
Impatient

You can have surgery with mirena installed already - but if I were you I would negotiate this one. Agree to have the mirena installed during a lap op with general anaesthetic - you are entitled to ask for anaesthetic when getting it installed, so the compromise would make sense and give your surgeon a better excuse and more justification to give you the GA lap op.

The real problem with having mirena in there first is that it will inevitably stop your periods and to some degree stop the endo bleeding too which makes it harder to spot when you do get surgery.

I would definitely question this round about way of fobbing you off. And to that end ask your GP to refer you to a different gynae - one who specialises in endo, it doesn't hve to be aan an accredited endo centre just yet -but you do need someone who knows how painful mirena instllation can be for endo ladies and will agree to do the lap and use that time to get the mirena put in at the same time.

Very best of luck, it is not an easy situation to be in, but you have to be firm - this is your body not the surgeons, and you must push for what you feel is what you need. Coercing anyone to do one thing before offering a diagnostic surgery is rather underhand and unprofessional.

amberm profile image
amberm

It sounds like I'm reading my own story. I did the same thing went to the gynaecologist and he said the same thing no lap and I should have a mirena and it will fix all the problems, but it hasn't, I've had it for 4 months, a bit less pain and less blood but I decided to go to the public hospital and she saw me crying and said I can have a lap!!!! I think you need to find the right person and when you do it will be worth it!

federica profile image
federica

Hi dear, I know how frustrating it can be when doctors don't listen to you. The good thing is that the doctor is really considering you having endo. That is a good start. Said that, I know now that the more you clean through laparoscopy, the more endo comes back with even more pain. It happened to me. The doctors I've seen so far (privately, so it's not that they don't want to spend NHS money) assured me that operating often would only make things worse. I've got one operation, and after just 3 years pain was even worse that before the op. I have been on cerazette since 2009 and I'm period free as well as pain free. My advice is: do try the mirena, it might put off the op for you, the more you put it off the better. If you are lucky as I am to find a way to manage endo without going through surgery often you'll be much better. Unfortunately laparoscopy do not solve the problem of pain but temporarily. If mirena is not working for you, try ask for cerazette. It is hash on mood at the beginning but it will get better and for me it has done miracles. hope this cheers you up a bit and gives you some hope

xx

Blondedia profile image
Blondedia

Hi. I had terrible pain like you, I'd had it for 3 years and it was only getting worse. My GP sent me to the hospital to see a specialist who agreed to do a lap, ultrasound scans won't show endo. I went for the lap 3 mths later, there is usually a 3 mth waiting list anyway, so it's important to push for the lap. It was just before my surgery that they spoke to me about putting a miren coil in and the advantages of it, one is to ease heavy periods and two, it helps minimalise the endo which does come back. The surgery removed an burnt as much endo as possible, it's like an iceberg apparently, what they see and deal with is the tip of it, they cant see the rest of it, so thats why i agreed to the coil. The coil has been no problem, (4weeks today it was fitted) I've had a period since and it was so incredibly light, normally I'm house bound for 2 days.

I suggest you don't take no for an answer, push for a lap, it's your body and you have a right to know whats going on with it!!!!! Try for a female Dr, they're more sympathetic.

I wish you well

Lisa xx

JennyFishfeet profile image
JennyFishfeet

Sounds to me like you should switch gynecologist too - there was a quote I once heard which sounds perfect for you... "a male gynecologist is like a mechanic which has never driven a car". Get another opinion.

anneliives profile image
anneliives

Hi! I would switch gynaecologist. Not sure where you are in the country but you can pm me if you want a recommendation.

I really hope you are not in too much pain. Like you I spent a long time on strong painkillers and many a duvet day before a diagnosis. Hot baths help if you can have then as well as heat I have found.

We are the same age, so I can sympathise on how this is affecting you, obviously two people pain is not the same, but sounds like your having a rough time.

the mirena takes up to six months to work and no guarantees it will. I had mine fitted during my last lap 4/5 weeks ago.

Really hope things improve for you soon xx

_Tamsin_ profile image
_Tamsin_

Hey everyone, thank you so much for your replies and sorry it has taken me so long to respond. Where I'm living I have no internet at the moment so I can only pop online using my phone occasionally and when I go home at weekends. I decided to go ahead with the mirena, which I had fitted yesterday. The doc said it was supposed to be uncomfortable but not painful, but it was absolute agony for me. I was actually screaming in pain and started crying because it was so painful! I'm still in quite a lot of pain but happy that it's done and praying that it will reduce my symptoms. Did anyone else have a bad experience getting the mirena fitted? The doc said that unfortunately it can be quite painful for women with endo X

JennyFishfeet profile image
JennyFishfeet in reply to _Tamsin_

You stayed with your male gynecologist? I'm sorry to hear about the agony he put you through Tamsin, but you're really creating your own problems on this one.

_Tamsin_ profile image
_Tamsin_

No this was my GP who used to be a gynecologist, he is 100 times better than the one I saw last month. I spoke to him about everything then agreed that the mirena would probably be the best thing. I have a follow up appointment with a different gyneocologist in a few months, so luckily I won't be seeing that awful one again x

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