Endo or just low pain tolerance?

[201405]

Hi all,I need some advice please as I feel like I'm losing it.

Apologies for my long message below.

Since I ve got my period at the age of14, I've always been in excruciating pain( felt like being continuosly stabbed in my pelvic area and if i didnt take any painkiller, I would have ended up fainting). I would also have pelvic cramps even with 1 week before my period. As my sisters were also in tremendous pain, I thought this is normal..

In 2017 I went private for a gyno appointment and had an internal pelvic check up. I was told I have endometriosis, advised to conceive a child, and prescribed menefanamic acid. For the first time after 17 years I've got my period, someone enclosed all my symptoms in one word.. but I didn't understand the full meaning of this condition and didn't even gave too much thought. Again.. It s because this kind of pain has been with me from the beginning and never knew something else.

This is where my doubts come now as I've read so much about this condition that I came to learn that the main way to be diagnosed is via a laparascopy.

Could a general gyno detect endo only via an internal pelvic exam?

Moving forward, I had 2 children between 2018 and 2022, and my symptoms got indeed better after I gave birth of each of my child, for 2years and few months.

November '24 this endo or not endo, came with such a vengeance that I had to leave my job, in the middle of the day as the pain was so unbearable. I also dealt with additional symptoms: extreme nausea and dizzines, felt I was about to faint at any time. Furthermore the pelvic pain was felt like a proper contraction when you are about to push.. I felt my body cut in 2..and my pelvic area scratched and stabbed by dozens of knife non stop.

I went to my GP and referred for an ultrasound and gyno visit( the earliest gyno visit available this March the 7th)

The ultrasound showed an ovarian cyst 2.3×2.2 cm and referred for a follow up scan after 6 weeks. The 2nd scan showed nothing( the visit lasted less than 2 minutes as the sonographer could not find any of my ovaries and gave up saying he can't see anything and will inform my gp it s all good).

On 31st December, 1 day before my period started, I got a new symptom along the pelvic cramps: half my spine went numb that I had to be helped to reach my bed as it was affecting my mobility as well.

Whilst my symptoms were normally closed to my period, now I have these even on days who are not even close to my 1st day of period:

Pelvic cramps,

Lower back pain that occasionally triggers half my spine to go numb and then it radiates down my legs

Sudden nausea

Horrible bloating shortly after meals

Chronic fatigue ( it doesn't matter I get to sleep 8-9 h). The fatigue is so bad that I barely keep my eyes open or walk

Brain fog

Painful ovulation

Sudden sharp stubbing pain in my right ovary

Occasionally intercourse pain during or discomfort afterwards

I'm so mentally exhausted and tired that I booked an app on 6th of March with Endometriosis clinic based in London, where I'll have a transvaginal ultrasound with an expert in endometriosis and the consultation afterwards.

My only fear is that despite all these symptoms they will find nothing and this is so overwhelming.. the waiting time until then is also so emotionally draining, whilst dealing with all these symptoms.. can all this be in my head only or just have low pain tolerance? I can't stop asking myself this on a daily basis.

Any advice it would be so much appreciated and thank you for taking the time to read all my queries.

[JOSANDY40]

Unfortunately a Keyhole operation probably is the best way of finding out if there's Endo adhesions or its distortion can be seen. Endo comes in different colours but sometimes Endo is not seen but you still might have it! The other thing that's werid about Endo is you can have it bad yet never suffer pain and its discovered by a investigating a totally unrelated matter.

[201405 in reply to JOSANDY40]

Hi Josandy40,Thank you for getting back to me. This is what I was afraid of. And I keep asking myself why then the consultant who saw me said I have such thing?

I'll guess I'll just have to wait until 6th of Maech and hopefully will get some clearer answers to my sympotms.

Best wishes

[Silks32]

Hey, I’m sorry you’ve been experiencing so much pain, that sounds awful and I hope you find some relief soon! Just wanted to add in on your question about being diagnosed. I was diagnosed via an ultrasound scan in 2021. It was followed by an MRI which confirmed but I think they could only see endo on my MRI because it was severe/deep infiltrating. I believe it’s not always detected on ultrasound and MRI which is why laparoscopy is often offered for diagnosis. I’ve only just had a lap, 4 years later to remove cyst and endo. I’m glad you are going to an endometriosis clinic, I’m part of one in London on the nhs and they have been great. Good luck with your appointment x

[201405 in reply to Silks32]

Good morning Silks32,Thank you so much for your kind words and info.. this is very useful, and whilst I'm happy for you that you got officially confirmed with Endo, I can't imagine the emotional and mental energy put into it that comes when dealing with all this. I hope the surgery brought you some pain relief.

May I please check what is the name of the hospital with nhs and how long was the waiting time? Was it 4 y?

As with nhs I have no proof of such condition and that would mean to start fighting for everything from 0 and I really don't have any energy left to start this battle.

I am telling myself off every day for throwing the letter from that gyno visit, as now I have nothing in hand to proof this.

I wish you all the best and positive vibes.

[Silks32 in reply to 201405]

Hello, I’ll send you a direct message with the details of the NHS endometriosis clinic and consultant I see there as I’m not sure how much I can share publicly. I was on the waiting list for around 2 years before I had an initial appointment. X