Endometriosis Help!

[Lululemon98]

Hi, I am 21 I have had problems with my periods from the age of 14, and I have been to and from hospital and at one point I lost so much blood from my period I may have needed a blood transfusion ( luckily I didn't ). I have pains so bad every month that I cannot walk, and I also feel bruised. I have severe pains down my legs, both of my ovaries and I get very tired and sick. The pain starts around 2 weeks before my period, I have one week between periods where I am fine but it starts again, I have had a year or two of constant pain even between periods. I have been told several times by doctors that there is nothing wrong and scans have not shown anything ( I know that endo doesn't show on scans) and I have been to a private doctor who recommended the combination pill which isn't doing anything, I have no idea what to do now as I am certain something must be wrong with it but I feel like I am hitting a brick wall with it all. My question really is anyone with endo do these symptoms relate to you at all? or is everyone different? and how do I go about getting somebody's attention that it may be something serious?

[Lululemon98]

Any help would be appreciated as I have no idea what to do

[Adventure101]

Hi sorry to hear your going through this. I relate to some of your symptoms however endo can cause different symptoms for everyone. Unfortunately drs take years to diagnose endo and can make you feel like your crazy when you keep going back ( i have been told by many drs it was nothing and phantom pains before diagnosis).

My best advice is to demand a referral to a specialist from your GP and dont take no for an answer. You know your body better then anyone. And unfortunately the only way to get a diagnosis is through laparoscopy. Hope you get answers soon

[I3obstar in reply to Adventure101]

Absolutely agree...demand & push as my symptons were ignored since the same age and only discovered 26 years later.Good luck

[Lululemon98 in reply to Adventure101]

Thank you for replying, It is very stressful. I have been told the same thing, and have also been told it is "just woman pains" and they will go away. I am going to ask for a referral and try and get it sorted ( fingers crossed they listen) Best of luck to you x

[Hidden]

Hi Lululemon, So sorry to hear your story. Like other posters I would demand a referral to a Consultant Gynae (preferably an Endo specialist). The NICE guidelines on endometriosis are very clear that a patient with chronic/ persistent cyclic/acyclic pain that is not relieved by the Combined Pill should be referred for further investigation and that laparoscopy should be considered. You can access a copy of the guidelines on line (and maybe print off a copy to take your GP). My daughter has experienced similar symptoms and, although it took a bit of to-ing and fro-ing to the GP, we did eventually get a referral. The consultant has been very thorough and, after a clear ultrasound, we are now awaiting the results of an MRI. My daughter is a few years younger than you, so the consultant is keen to avoid any surgical interventions unless absolutely necessary. At the moment she is using the Combined Pill taken continuously to suppress her period altogether. This has helped reduce her symptoms a little, but she does seem to get a lot of breakthrough bleeding and associated pain. As others have said, the diagnostic pathway for Endo is shockingly long and slow, but the NICE guidelines exist to show what the clinicians should be doing, so this should help persuade your GP to make a referral.

Best of luck and I hope you can get some relief soon

[Lululemon98 in reply to Hidden]

Thank you for replying, so sorry to hear about your daughter. I have also been recommended the combined pill, and I have had no progress and the pain is still the same. Best of luck to your daughter.

[PurpleSynesthesia]

Absolutely agree with previous comments. You must fight your corner & demand a referral. I've been ignored for 20 years & wish I'd had a group like this before to encourage me & empower me with information.

I'm currently on the waiting list for diagnostic laparoscopy.

I don't get the bleeding like you but certainly get the pains.

Your GP is neither specialised or qualified to diagnose or treat endometriosis. You need a laparoscopy, preferably with a specialist - at which stage they should remove as much of the endo as possible and either fit a mirena coil or go through other options with you.

There are women who have no symptoms besides infertility, there are women who haemorrhage severely, there are women who cramp relentlessly, there are women who have a mix of all but the one thing in common is endometriosis. There is no one-size-fits-all symptom/ diagnosis/ treatment.

All the best, keep us posted & research lots xx

[Lululemon98 in reply to PurpleSynesthesia]

Thank you so much for replying, I will need to push for a gynaecologist and definitely do my research! Best of luck to you xx

[cracker09]

We're in the same position, only my daughter has had a diagnostic lap which did show endometriosis and it was removed, however she was seen by a general gynacologist and not a gynacologist with a special interest in endo. This was a mistake, please, please push to see a gynacologist with special interest. We are now trying for another referral because the symptoms are much worse and I believe the general gynacologist did not know how to look thoroughly and has missed some. We were also dismissed saying some women will always have pelvic pain and told to go back if there are fertility issues! Please do not be fobbed off with a general gynacologist. Read the NICE guidelines and print off to give your G P with a list of symptoms, that's what we will be doing. Good luck

[Lululemon98 in reply to cracker09]

Thank you so much for replying, I need to push for a gynaecologist as I am sure there is something wrong ! So sorry to hear about your daughter and best of luck. The lack of knowledge of endometriosis is terrible.