Waiting for diagnosis & mini-pill recommendations?

[emmee93]

Hello,

My name is Emily. I'm 27 and live in North East Scotland with my partner, best friend, cats, ducks, chickens and sheep.

Like many of you I've been back and forth to my GP for years trying to make sense of my symptoms.

I feel closer to getting a diagnosis than ever but an answer is still just out of reach and after the last 4 days of not being able to walk, passing clots the size of my hand, being in the worst pain yet and considering A&E, I'm very eager to find out what is going on.

I've visited GP's for period issues all my adult life with little success, most often leaving the surgery feeling like I've overreacted and even though I still feel like this at times I know that something is not right and I, like so many women have been let down by the health care system.

After three years of mentioning Endo to doctors, I finally had an appointment with a gynecologist on Friday. I was very hopeful that I would get an appointment for a laparoscopy but she has said I need to try the mini-pill for three months first. I said that I thought I was getting the laparoscopy booked but she replied that although it is likely that I do have Endo, they want treat it first before testing to see if I have it- How on earth does that make any logical sense?!?

Anyway... I'm waiting for a GP call back to get blood tests booked and get started on the mini-pill. *UPDATE* The GP called back to say I need to wait for the Gyno letter to arrive before starting the pill- more waiting, yay!

I wanted to ask what brands ladies have had the most success with?

Obviously every woman will react differently to it but I'm very nervous of taking it as the Cilest pill last year made me very poorly. My main symptoms are below in case that affects which pill is best.

Symptoms:

Heavy bleeding and large clots

Irregular bleeding (bleeding everyday for months, then no period for months, then heavy period for weeks etc.)

Pain and bleeding during/after sex, on opening bowels, heavy lifting or exercise.

Severe pain that doesn't go with painkillers that travels down to my knees.

Vulvodynia

Migraines (followed by bleeding)

Nausea

Thank you in advance.

[Violet159]

I'm on desogestrel which seems to be a common mini pill, I know several people taking it. It's a relatively safe pill with few side effects for most people (but obviously everyone reacts differently). I found it very helpful for my period pain but after being on it about a year and a half now the pain is gradually getting worse again. Also you mention irregular bleeding - it's very common to get that with mini pills, for me I sometimes get periods quite close together and then months in between, and my last bleed lasted almost a month (but very light bleeding). Other people I know on it don't get periods at all though, so its worth a shot. For me I got mild side effects at first but they wore off after a few weeks (nausea, dizzy spells, sore boobs).

So I would say it's worth a shot to see how it effects you, but even if it helps your symptoms it's still worth pushing for a laparoscopy for a proper diagnosis and because there are long waiting lists for them.

Good luck and I hope you get answers and some relief soon!! Xx

[emmee93 in reply to Violet159]

Thanks for your reply.

We sound similar in regards to the bleeding patterns. It's reassuring to hear your side effects were mild. I will look into that pill now.

I'm sorry to hear your pain is now returning, this seems to be common from what I've read.

I am definitely going to push for the laparoscopy as I just need to know what it is for sure. From my symptoms I'm guessing if I have Endo then it may be on my bowels which may need removing so I really hope I can get them to take a look to see what's happening.

x

[Afrohair]

It’s your choice to take the pill if you decline they have to offer you something else

[emmee93 in reply to Afrohair]

I've discussed with doctors before about not liking the idea of taking the pill before knowing if I actually have Endometriosis or not but they have said I need to take it before they will do the test. Very frustrating as I really don't like taking medication.

[Afrohair in reply to emmee93]

They can’t do that it’s your body if you don’t want to you could just pretend if that’s the case and say it’s not working I took it for 2 month made my endo worse

[emmee93 in reply to Afrohair]

I've considered that as I am concerned about possible side effects from the pill. I've just had a letter saying I have another consultation next week which I wasn't expecting. Hopefully she's actually looked into it more and decided to get me the laparoscopy! Probably not. She didn't even have any medical notes for me during the telephone appointment.

[Afrohair in reply to emmee93]

My first gynaecologist appointment was horrendous they told me to take the pill then asked me what I wanted on the 2nd app I said a lap but they wouldn’t offer me a lap with a specialist so I declined and went back to my g.p for a referral to an endometriosis specialist

[emmee93 in reply to Afrohair]

I may say the same when I speak to my GP next.

[AllthatGlitters]

Hi sorry you are another lady to be going through this. Where in Scotland are you? I am Scotland too.

I have very heavy bleeding with clots, anaemia, pain, so a lot of your symptoms.

I am on rigidevon but it only helps slightly, they me the pill to stop the bleeding but it doesn’t work. I bleed for months at a time. It’s exhausting. I would say that you may come across gynaecologist who can be quite dismissive, that’s what I have found. You really have to stick up for yourself and also get your GP on side to help with that battle. Anyway please feel free to PM me if you wish x

[emmee93 in reply to AllthatGlitters]

Thanks, just messaged you

[kate24601]

I took the pill for 4 years before they requested a lap for me, and as expected, no endo as it had been treated for the last 4 years. Shortly after I came off the pill (was on cerazette and it was literally the worst time in my life) and doctors told me not to as it would make endo grow, despite them all telling me I obviously never had any in the first place! Thankfully I got pregnant and it seems to be manageable but I don't plan on going back on anything after she's here as it made my life miserable. Women's health is so underfunded and misunderstood its disgusting, a laparoscopy is the only way to diagnose endo and the fact doctors are so reluctant to actually give people a diagnosis is part of the problem!

[emmee93 in reply to kate24601]

I'm glad to hear things have improved for you lately. I have heard symptoms can ease after having children. I don't want children so wont find out but then it could make it even worse too!

From what I understand it seems any hormonal change can make it better or worse but there's no way of telling.

I feel that we are criticized by doctors when we say we don't want the pill or coil etc. but dishing out these options instead of running tests is just them trying to get us to stop complaining.

I really don't like the idea of the pill as I don't like taking any medication for environmental and health reasons and many people feel the same so they need to do better.

It seems that Endo is more known about now so I hope this will help to improve the way it's treated.