Doctors refuse to help me - any advice?

[peeriejool12]

Hello, I hope you're all well. I'm new here so sorry if this a little wafflely...

I was 'diagnosed' with Endo in March this year and have since seen four doctors across the country (moved from Scotland - London) all of whom have told me outright they have no idea what it is or how to help me. I've had awful periods since they started about 6 years ago.

All four doctors refuse to carry out an operation confirm Endo as I am young (22) and not planning a family so 'doesn't matter if I have it or not!'

I had a Mirena Coil fitted in May and this has made everything so much worse. I've never bled or had pain like it since being fitted and considering I 'probably' have Endo, that's saying something. Does anyone know if this is normal and it will go away?

I have now got an appointment with Gynaecology in a few weeks but feel unprepapred as I don't know what to do.

Any advice or information would be really helpful.

Thank you

[princessk09]

Hey, I’m sorry you’re going through this and not being listened to. Is the gynae you’re seeing an endo specialist?

They do tend to listen and help more since they understand endo a bit better.

I’m 19 and had a lap a week ago, gynaes do try and avoid surgery on young people as it can cause problems in the future.

I’ve never had the Mirena coil but you can get it removed if you already haven’t. You just have to really advocate your problems to the gynae and don’t take no as an answer xx

[Cupcake1617]

I’d keep a pain diary and show the consultant. It was only once I had one to visually show my pain they agreed to an operation. Hope it goes okay x

[dogdaft]

I’m so sorry you’re not being taken seriously. I think that this is a ridiculous stance. I think in most cases it’s about weighing up how much it’s affecting every day life, and how the person is coping with the symptoms. Endo can affect fertility, as we all know. I agree with above, that you should keep a symptom diary and report this back to your healthcare provider.

Most importantly, be an advocate for your own health. Shout it from the rooftops if you have to. This is sometimes, unfortunately, the only way that they will listen. I was in and out of A&E, the doctors and out of hours. Only after 11 months of trying did they take notice. Keep us all updated honey. There’s lots of women here still fighting for the same result.

C x

[Hussain29]

Hi I have had Endo for 20 years have had 9 lap surgeries and a full hysterectomy hysterectomy last year however been suffering from pain again this year back in hospital had surgery on surgery and they found more Endo that they removed not something you can get rid of.

[Angellouise]

I’m so sorry you are going through this. What about the depo shot it has helped my daughter and she is 16 .what about a clinic for woman ? We have one here that just deals with woman’s problems , I live in Canada. I hope you get some help soon

[Lynne_support Partner Endometriosis UK]

Hello

I'm sorry to hear you are having trouble getting treatment for your endometriosis. You night find it helpful to read our 'Getting Diagnosed' information pack endometriosis-uk.org/sites/....

There is also a lot of information about what to expect when you go for your consultation and some suggestions on how you can prepare on our website endometriosis-uk.org/sites/....

You may also consider getting a referral to one of the accredited endometriosis treatment centres, alsit can be found on the BSGE website endometriosis-uk.org/sites/....

Good luck with your next appointment, I hope you get some answers

Best wishes

Lynne - Endometriosis UK

[JAD95]

Hello, I am so sorry you are having such difficulties getting medical professionals to listen to you. It absolutely does matter if you have it not as having endometriosis has such an impact on you both mentally, emotionally and physically as well as on your everyday life and those around you. It is so important that you have the support you need. Unfortunately, medical professionals don't seem to take young people with endo seriously, something I know that all too well myself. I am 23 and got diagnosed at 17 after a 4 year battle.

I completely agree that you must shout from the rooftops as it was the only way I got the help I needed. Try and find an endo specialist in your area that your GP can refer you to, if the gynae you have been referred to is not an endo specialist. It is so important to have someone who knows endo inside out otherwise you'll find that they are more of a hinderance than a help! Medical professionals that are not familiar with endo are usually of the opinion that because something has worked with one person with endo means that by default it will work for someone else which is definitely not the case!

This is particularly true of the mirena. I tried this and it made my endo 10 times worse. I had to have it taken out after 3 months as I could not cope with the pain anymore. Don't be afraid to have it taken out if you feel it is not working for you - you have to listen to your body!

I wish you all the best and hope you get the answers/support you need.

Stay strong x

[peeriejool12]

Thank you so much to everyone for your advice. I’m so sorry for the late reply. I’ve got an appointment with my Gynae later this week and I’m hoping that will give better answers. Xx

[Crackerjack4u]

Hello, I'm actually in the US, but ventured to this site to try to help those who are struggling with a disease that I've already dealt with for many years. Let me start by saying that I'm so sorry that you are having to go through all this, and that the doctors aren't helping. Endo itself can be a pain-in more ways than one, and then to add doctors who haven't got a clue, refuse to listen, and refuse to help to the mix makes your already stressed body/mind that much more stressed. Hopefully the gyno will be able to help you.

Here's a bit about my Endo history: I've had severe Endometriosis for about 35 years, have had 10 laps for removal, been put on a very expensive drug called Lupron to put my body into menopause for 6 months-the 1st shot caused me to break out from head to toe in a rash, thankfully I was able to have a beautiful daughter after years of trying, followed by a 2nd pregnancy that was ectopic-(I had my remaining tube tied during that removal surgery), and eventually ended up having to have a complete hysterectomy at the age of 34. So there's not much I've not had done or experienced because of Endo, so feel free to message me any time if you'd like.

As far as the Mirena, although I never had it, I found that anything that was placed internally- be it tampons, diaphragm, having sex, etc. always made my pain much worse, since it is causing you so much trouble you might want to consider having the Mirena removed, and using a different form of birth control. I don't know what's available where you're at exactly, but if you decide to use something like birth control pills, etc. be aware that high levels of estrogen feeds Endo, so you'll want to stay with something like Depo-(My daughter used this and it worked great for her), or perhaps a low dose estrogen and higher level progesterone pill. I also personally had very good luck with a birth control pill called Estratest HS which is a low dose estrogen mixed with a form of testosterone-(the male hormone). I'm sure you and your gyno will figure out, perhaps with some trial and error, which one will work best for you.

As far as the gyno you will be seeing, hopefully they will know what they're doing, and be able to help and guide you along the way. If they don't seem knowledgeable on Endo then don't hesitate to find someone who is because this is your body, your life, and your well being so be your own best advocate to your treatment. Best of Luck hun. Keep us posted on how you're doing!!!