Potential endo keep being made to feel like I am wasting doctors time.

[fuzz90]

I don't know what else to do. I was put on the pill like every other teenager for bad periods. I would pass out be sick, and the pain used to be really bad. I used to have to go for anti inflammatory injections. Anyways I was eventually put on Cerazette not just one but 2 tablets a day. My periods stopped for over 10 years then I started to get pain again, and my periods started to come back. I went to the first doctor for him to tell me I was constipated, and I was proscribed laxatives. I tried to explain that I wasn't a moron, and I know when I cant go to the toilet. I decided to go to a female doctor the next time and this time she actually sent me for a scan that come back clear, however I was told at the time, due to the amount of time I have been on the pill it may not show anything, the only way to find out would be to come off the pill. Me and my husband spoke and we decided we would try for a baby, so that meant coming off the pill. I was absolutely terrified purely because I knew what was coming. I have been totally off the pill now for nearly a year now, and my symptoms are horrendous. Back pain, pelvic pain, horrendous bowel pain, tiredness, extreme bloating, heavy periods, painful sex, sharp nagging pains in my right side around the time I would be ovulating and also still not pregnant. I plucked up the courage to speak to yet again to another doctor who said my scan was clear so I just have bad periods and basically to get on with it. I explained everything about the scan and the fact things may show up because am not on the pill anymore. He just said its just heavy periods, and if your not pregnant to come back in a month for fertility tests... I feel lost, I feel like am I over reacting? does every woman go though this and do I just need to get over it? I get so much anxiety every time I speak to a doctor now, purely because they make me feel stupid.

[Moon_maiden]

HiSorry you are struggling to get answers. You aren’t stupid, don’t let them make you think this. If it was ultrasound, needs an experienced user to see endo, most don’t. MRI may show deep, but the reason for a lap is for diagnosis still. So they can’t say you don’t have endo.

Try not to get anxious, but it’s not easy, my anger tends to override this, but neither are good angles, so I’m trying to be firm.

Have a look at the endo uk site, lots of info on consultations. Symptom diary.

The main thing is you are not wasting their time and they should be doing everything they can to help. A GP once told me you have to push to get anything as they are so busy. They probably regret telling me that.

Tell them you want a referral to a gynae who deals with Endo and fertility. Maybe look up the consultants and see if there is one in particular. If you can afford a private consultation, and we shouldn’t have to, but it made my life so much easier.

[fuzz90 in reply to Moon_maiden]

Thank you so much for your reply, I really appreciate it.

Honestly its so nice to hear from someone that understands where I am coming from.

X

[Moon_maiden in reply to fuzz90]

Have a think about diet as well, there’s loads of advice here. It didn’t help me much, but there’s at least one lady who it did help and she also became pregnant. Don’t lose hope 😀 vits and minerals such as magnesium, Vit D we tend to be short of.Let us know how you get on 🙂

[TennisAM]

Hey, it's not you, it's them. Your doctors sounds like morons. I'm glad you spoke up but sometimes we have to force them into action.

Afterall, you are suffering, this isn't normal so they should be helping you. Gaslighting you is never okay.

It's your health and wellbeing, they aren't I'm charge - you are! Pushing them into doing their job works for me, be firm and assertive, it will work for you too.

Your doctor doesn't understand endometriosis. Endometriosis mostly does not show up on an ultrasound.

If I were you I'd force them to refer you to a gynaecologist. Based on your symptoms I think you need a proper endometriosis specialist.

I'd speak with the female doc again and push for a referral to a bsge centre near you (if you have one: bsge.org.uk/centre/page/4/)

If there is one nearby then I'd check the reviews of the consultants on the following sites:

Doctify

Iwantgreatcare.org

Gooddoctor.com

Topdoctors.co.uk

Even if they're at a specialist centre some doctors are still are a bit below par! Once you decide who you want to be referred to ask your GP to name them on the referral form.

Under NICE endometriosis guidelines you should be referred to a BSGE centre if you either have scans showing deep endo (MRI) or your symptoms suggest you have severe endometriosis. In your case you have suggestions of multiple organ involvement

It's possible that surgery to remove the endometriosis (if you have it) may actually improve your chances of having a baby.

Have you tried probiotics? There are many other natural things that work. Happy to share my research with you. I have severe endo and the thing I found have all worked for me.

Best wishes

[fuzz90 in reply to TennisAM]

Thank you so much for taking the time to reply. I will definitely look into the information that you have provided. X

[TennisAM in reply to fuzz90]

You're welcome, feel free to send me a private message if you want the other natural things that work xx

[fuzz90 in reply to TennisAM]

Thank you 😊 Xx

[Endo_Phoenix]

Hi fuzz90. Im so sorry that you are in such a bad shape and struggling with diagnosis. I remember when I was diagnosed about 12 years ago I was told by most gynaes that its just bad periods and I should take painkillers. I still remember when I was in so much pain one day and I called up the gynae and she sounded so upset that I called her for period pains. Never went back to her. All my scans were also clear. Then I found one doctor who said I may have endo. That was the 1st time I heard about it. I insisted on diagnostic laparoscopy and agreed to surgery if they found something. They found adhesions all over my abdomen and on my overies. After 1st surgery I was in peace for almost 3 years. I also conceived naturally post surgery as they cleared up my tubes.

Diet does help to some extent. When I avoid gluten, diary and sugar, I feel less bloated. If you strictly follow an anti-inflamatory diet (you can find a lot pf resources on internet. Lookup for endo diet), you will feel better with pain too but ofcourse it takes longer and requires a life style change. Having said, if you have an aggressive endo and at worse stage, you will need treatment which is surgery being most effective, atleast for some time.

We all understand what you are going through and its definitely not in your head. I really hope that you find a resolution to the issue. All the best!!