Endometriosis symptoms but not Endometriosis, HELP!

[TaylaRyan]

Hi, My names Tayla and I'm writing on this website as I'm in need of some help from you all. this is my story

August 2017 I started developing extremely severe abdominal pain, I had no idea what was happening to me. I took many urine tests and blood tests and still none of my doctors had any idea what was going wrong with me, my legs and back started getting very affected by my pain to points where I was getting rushed to hospital not being able to walk at all. screaming and crying in pain wanting to end my life every day because I couldn't take the pain anymore, finally the hospital did an ultrasound but absolutely nothing came up. I was getting stressed and my legs were getting so sore that one night I searched what causes abdominal and leg pain and the only thing came up was Endometriosis, every single symptom I was having was the exact same so I asked my doctor if it could be endometriosis and she looked straight at me and said that it could just be it, I got excited I thought that what was wrong with me I finally had the answer to what was wrong with me. She wrote me a referral to a Gynaecologist and I was told that I may have to wait up to 3 months to get an appointment unless it was urgent, I got in straight away. he examined me and decided to do the surgery, I was on a waiting list for up to a year but I ended up asking if I could be put in earlier as I couldn't go to work, I got in within 2 months. on the 3rd of April 2018 I had laparoscopy and absolutely nothing came back, I was healthy. I have never been so upset in my life because I'm right back to square one. I ended going back to the hospital the next day in pain I cant even describe, I didn't get back home for another 3 days. someone PLEASE if you have gone through the exact same thing please help me, I need answers, I cant take this anymore, I just turned 18 and my life is being defined by this, I'm in so much pain and the doctors don't know what I have. I'm sorry this has been so long to read but I need your help.

Thank you.

[Kathy_Page]

I think I am in the same situation, my gyno says based on MRIs and the fact that I concieved easily (although miscarried), that I don't have endometriosis. No surgery has been done yet, but I get pains daily which goes to my leg, my activities have been affected and can't even go for a walk.

I might end up in a lap soon but I have heard you should get lap done with a good fertility expert, general gyno sometimes cannot find endo.

Where do you exactly get pain? I have it in left side predominantly left to my belly button and may be ovaries, little pain on right side. I am wondering if it's only endo or other things that could cause such pains.

[TaylaRyan in reply to Kathy_Page]

My main pain feels like its in my fallopian tubes and they swell up really bad at times it looks really bad and that's when its most painful, its right above my public hairline not so much in the middle but on the left and right near the creases of my legs starting, if that makes sense

[Kathy_Page in reply to TaylaRyan]

If the fallopian tube is swelled up, it could be PID but doctor knows better. I have pain in the same place. Visit doctor tomorrow, I am asking her to get a CA-125 blood test done. Will let you know.

[Catness]

Tayla I’m so sorry you’re suffering so badly, it must be heartbreaking to hear that your lap came back clear.

Firstly, some ladies on here have had one or even two laps come back all clear and then have a specialist do another lap who actually finds endo. So do you know if you were treated in a specialist endo centre? You could google ‘specialist endo centres’ and see what comes up? If you weren’t treated in a specialist centre or your surgeon didn’t have a certain level of expertise it may be that they were not able to spot it.

When my symptoms first started I was around 20 years old and wasn’t getting anywhere on the NHS. I paid to see a private consultant who specialises in endometriosis (I found her by googling private consultant - endo. It was that simple) and was able to see her within the week. It usually costs between £180-£200 for an initial consultation which I know is a huge amount of money. However, the expertise of the private consultants is vastly different. After that initial consultation I was booked in for a laparoscopy on the NHS as the consultant was able to re-refer me back in as she worked for both. It turned out I had stage 4 endo and interstitial cystitis amongst other things.

Other considerations could be adenomyosis which is very similar to endometriosis but occurs within the uterus itself. This wouldn’t necessary be found during a lap.

I personally think your best option is to try and see a specialist. Take a list of absolutely all your symptoms including ones that you may think at first thought may not be related and have them in a timeline if possible and that way the specialist will have a good contextual understanding of what it is you’re going through on a day-to-day basis.

Where are you based? I can give you the details of a consultant in the West-midlands or south coast if either are good for you.

Xxxx

[TaylaRyan in reply to Catness]

I'm based in Australia NSW, in my town we don't have any endometriosis specialists but I had a look and the closest one is over 12 hours away, I had 3 doctors that did my actual surgery and one was my gynaecologist so he was probably the closest person to being a endo specialist aha I did ask about adenomyosis but because ive had a ultrasound they said that nothing comes up at all so I don't have that. it was the most heartbreaking thing for my nurse to walk in and tell me I didn't have it I broke down for a good half an hour when she told me, I just want to fix whatever is wrong with me. thank you so much for your information though it could really help me, I cant thank you enough.

[Catness in reply to TaylaRyan]

Oh okay I didn’t realise you weren’t in the U.K. I’m sorry! I also had an ultrasound before my lap and nothing was diagnosed from it - apparently everything looked ‘fine’. So that’s worth considering too! I really hope you get some support xxxx

[Krithika]

I wasn’t officially diagnosed with endo because I haven’t had surgery and my blood test shows that my hormone levels are fine, but I’ve been suffering with abdominal pain since September 2017, and since the age of 13 with leg and back pain during the first days of my period. The pain feels like a burning sensation in my lower back and it shoots down my thighs, and also impacts my buttocks area and makes me feel like I need to poop even though I do not really need to. What does your pain feel like?

[TaylaRyan in reply to Krithika]

What you just described is pretty much the same except mine isn’t burning it’s as if someone is running a knife down my back and leg and constantly stabbing me