Returning symptoms

[Love_2_Bake]

I was diagnosed in my early 20s after my second laparoscopy. I had surgery around 19/20 yrs old looking for Endo and they found cysts on my ovaries. Second surgery they went in looking for cysts and found Endo. Sadly the hospital I went to just didn't know enough at the time (about 12 years ago) and both times told me "we burnt it off you're good to go" no one told me it would grow back or that I needed more medical support.

So for years I continued on. The symptoms came back and I did nothing about it (I was on contraception so symptoms at the time were mild) but I felt like I was just crazy and it was all in my head.

Finally once chance conversation with a manager whilst we were on a works do set me back on the path of seeking help after she told me "it grows back"

So back to the GP I go and get referred to another hospital (I had moved counties by now) I have a third surgery and the coil put in place I was told (whilst still somewhat out of it) "we burnt off what we could and put your organs back into place and put the coil in" and off I was sent with some pain killers.

My recovery was painful and slower this time but I got there.

I was eventually referred to the pain management clinic once my symptoms returned again I was offered painkillers and told anything else I would have to look at and sort myself it would not come from the NHS.

I got a tens machine and electric heat pad and single use heat pads for when I was out on visits at work and pushed through.

For the most part I was ok then a few years later .... Everything came back. I was going into my team meetings hunched over the table. I think I even semi passed out during one meeting. I realised that the coil was no longer doing it's job. For years I had been told "have a baby it will help" so I had the coil removed and told my husband now was the time to try. (Not because I thought it would help but I was actually ready to have a baby) 6 months approx after having the coil removed I fell pregnant (2 months before lockdown woohoo!!)

After a horrid pregnancy and traumatic birth which ended in an emergency C second we welcomed my amazing little boy into the world. He's now 4 ½ years old. No regrets having him he's perfect.

Since all of this I decided now was the time to get healthier I wanted to be able to be as active as possible for my boy. The endo pain was gone but I still had the fatigue and brain fog and I have the coil again (put in a couple of years ago) so I am 1½ stone lighter and suddenly over the last 4 months Symptoms have been coming back.

Pain, ovulation type pain, brown spotting once a month, more pain everywhere, my hormones have gone off the rails and the migraines!!

Surely there timing is coincidence and I'm not getting symptoms because I've lost some weight.

I'm now back on naproxen (only drug that doesn't knock me out) and omeprazole.

I have more heat patches as well.

I guess I'm reaching out to see if anyone else is having a journey like my own??

I always say I'm one of the lucky ones as apart from planned surgery I haven't ended up in hospital due to the pain.

I don't know the stage of every or where they found it. I'm currently trying to get my records for my last surgery to find out.

I don't feel like I have been taken seriously because I was brought up to ignore the pain and push on as it was just one of those things of being a woman. So I've always pushed myself past the point I should have and feel that because I can do that I shouldn't be asking for help.

I'm at the point now where I feel lost and scared because I'm not back at the same pain freshold that I was at before but I can see it heading that way.

I'm scared it's going to get worse then before. I am much older now (37) and have more responsibility and more people relying on me now.

I feel very much alone in this battle as I'm not someone who has been freshly diagnosed but also I kind of feel like it as so much more is known now and there's more support but I feel like I can't access it because I've not just been diagnosed. And now it's just "one of those things"

[dogs1111]

Hello,

I'm sorry you are feeling so lost. Endometriosis can make you feel that way. I have had it for 30 years and it seems to be a constant battle to get Drs to believe you and your own particular symptoms. Make sure you get hold of your records so you can find out exactly where is was. You have a right to see your own medical records. I have felt if I am more knowledgeable I am more in control of my own body. I have done a lot of research and try to be as healthy as possible. Sadly it does grow back and continue even after hysterectomy sometimes. You most certainly should ask for help, that's what the Drs are for. I know it feels like you are alone but you aren't. Try if possible to get a referral to a Gynae who specialises in endometriosis. Take good care. xx

[Love_2_Bake in reply to dogs1111]

Thank you for your kind words.

I have been back to the drs today and she was really lovely and has referred me to the gynecological team and has put in for an ultrasound and also signed me off sick for a couple of weeks to give me some time to read up and research all the info out there.

[dogs1111 in reply to Love_2_Bake]

That's so lovely you have found a helpful Dr. It makes the world of difference. Take a few weeks to take care of yourself and at least you have a referral and a scan. Good luck x

[Love_2_Bake in reply to dogs1111]

Thank you!! ❤️