No endo

[Ellyfant]

Hi guys!

You have all been so amazing and I am just writing to see if there is anyone else in the same boat now.

I've just been for a lap and they have said it is clear.

I am obviously incredibly greatful not to have endo however, my symptoms still exist and I feel like I am about to be pushed into the corner of 'its all in your head' again. Has anyone else had this happen and if so,(and it's been some time) did you get a diagnosis eventually?

I've had all the pills, the coil, GnRH analogues leading up to the surgery, the injection and many others but I've been severely ill on all except the GnRH.

I hope anyone else who has had this news knows you're not alone! It's hard knowing you are going to have to continue to battle to have your pain heard - I'm 19 and have been seeing the doctors since I was 12/13 about my painful, heavy, intense periods.

Thank you to you all for such an amazing group of people,

Ellyfant 💞

[Poppy96]

Hi,

I am 24,

My story is a little similar to you. I have struggled with period problems since my very first one when I was 13. After countless medications to try subdue the pain. I gave up going back to my doctor and just prayed my period would come on a weekend so I didn’t have to take time off school/work. I was told it was stress or it was because my BMI was showing I was underweight, then it was because I have IBS. Then it was blamed on the Coeliac disease I got diagnosed with a few years back. And also fibromyalgia which I have been diagnosed with this year. I thought they were right. I saw two different gynaecologists and had three ultrasounds over a 4 year period and they found nothing. No conditions whatsoever. The only thing they found was that I didn’t ovulate every month and was offered contraceptives to help the pain (I decided against it due to bad experiences in the past). It was until about a year ago, I started getting more symptoms. Period pain throughout the month, getting really sick when on my period, fainting due to pain and pain when urinating. I had another ultrasound scan two weeks ago and was told I have two patches that suggest endometriosis. (I’m left a bit in the dark waiting for a report from my doctor on what I do next really) But I knew it wasn’t all in my head! Just remember that you know your body, don’t let them convince you it was in your head. They did that to me and I went on suffering for years.

Some people swear by acupuncture. Alternative therapies may be a good place to start. I’m considering acupuncture.

I hope you manage to get the treatment that will help!

💛

[Ellyfant in reply to Poppy96]

Hi Poppy96,

Thank you for sharing! I am so sorry this happened to you but I hope you find the answers you are looking for soon!

I've had acupuncture before and am definitely going to be looking at getting it again as I've found it incredibly helpful for cramps in the past - sadly mine isn't open at the moment due to Covid but after! So if you are considering it I would definitely reccomend it!

I am going to go back to the doctors in the next week and try to see what happens now! I had an amazing gyn a while back who said she wouldn't just leave me if my lap came back clear, but the surgeon yesterday said they didn't need to see me in gyn again. So here's hoping the first one still wants to see me and I might have a wee foot in the door still!!

Thank you again for sharing, your experience really does mean alot and I can't imagine the pain you must be going through.

Sending you love 💞💞

[Poppy96 in reply to Ellyfant]

Thank you Ellyfant!

I hope you manage to get some answers or hopefully you get to go back to the nice gyn you had before.

I always felt like I should just “get on with things” when on my period. So it took awhile for me to be like “no this isn’t right”

It’s a tricky thing getting someone to listen so I really hope you get to go back to the gyn you had before. They sound like they aren’t just going to leave you in pain.

Thank you for advice about acupuncture I think I will really give it a go when the COVID conditions hopefully settle.

Good luck with everything! 💛

[EndoG]

Hey, You’re absolutely not alone in this. I had a laparoscopy 4 years ago which was clear, and this year I had MRIs and they found thoracic endo (lungs and bronchial tubes) and pelvic adhesions and fibrosis which suggested recto-vaginal endo.

I’ve heard of so many people having a lap that’s clear and then finding it years later.

You’re not crazy and there is a reason for your pain, even if drs haven’t found it yet. Xx

[Lou93]

Hi lovely

Hope your doing ok, I’ve been in your situation and I know the feeling your describing right now.

I’m 27 suffered for years with awful heavy irregular periods from the age of 13 tried so many pills injections all sorts saw gyne over the years on nhs and they would alway dismiss me, clear scans etc but I stood my ground and got a lap done around 5 years ago with general gyne and guess what no endo found, but got told you just have heavy irregular periods.

I discussed things with GP and at the time didn’t help much I later then decided to get another opinion after many hospital visits of pain getting worse I saw an endo specialist 2 years ago privately and he is great was so friendly and understood me straight away, had clear ultrasound and MRI but he wanted to do a lap and he found endo and adeno.

So please get a second opinion as you know your body and know when somethings not right 😘

Was it done under general gyne can I ask? X

[IndigoMoon1234]

Hi there

I was in a similar situation.

I had a lap in 2016. It was all clear. Nine months later a CT scan showed a 7cm cystic mass on my ovary. An endometriosis expert said it was an endometrioma.

The latest MRI showed 6 different types of cyst on my ovaries uterus and liver as well Adenomyosis.

I strongly suspect the (general) gynecologist who performed the lap missed something.

Go back to your GP to discuss the next steps. An imaging scan such as a CT or MRI could give you answers.

Very best of luck to you xx