Diagnosis: I am absolutely at my wits end... - Endometriosis UK

Endometriosis UK

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Diagnosis

Jemima32
Jemima32

I am absolutely at my wits end with this now. My Dr sent me for scans and 10 minutes ago I called them to see if my results had come through yet - all normal, no further action needed.

I'm devastated and have absolutely no idea what to do now. I'm convinced that I have it but where do I go now? I can't be in this much pain for no reason can I? I am so ready to just give up.....

12 Replies
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I can imagine how frustrated you must be! The feeling of just being tossed to the side because there's "nothing wrong with you" is absolutely the worst. One thing that's important to note is that endometriosis can't be spotted by a scan, unless you have a cyst. It can only be diagnosed through a laparoscopy. So, the doc you are seeing can't say you doing have it without having had the operation. Is the doc you are seeing a gynaecologist/specialist in endometriosis?

The thing is with scans is they can rules out anything else that could be wrong rather then diagnosing endometriosis, it’s very common for endo not to be seen of ultra sound or mri. I had both scans and it didn’t show on either but was told after laparoscopic surgery it was everywhere in my pelvis and was stage 4. So don’t lose hope. If your doctor is good they will then refer you on to gynaecologist to investigate further as a gp can’t Oder as many tests and procedures as gynaecologist can x

Peachii
Peachii in reply to Holleymuzz

Also top tip, start a pain diary now! Endo UK have a good one to follow, and if you can remember significant fays/patterns write them down, my journey had been slowed down by 3 months by being told to do a pain diary for 3 months before showing up again

I feel this completely! I'm currently going through diagnostic procedures too and they're so frustrating.

Endo or other conditions (such as PCOS) can't always be diagnosed via scans, when I was diagnosed with pcos I had previously had an ultrasound and 2 blood samples done on different occasions, it wasn't until I changed doctors and thought I might've been pregnant and they did another blood sample to check hormones did they find and diagnose me with PCOS.

Just go back and keep explaining what you're going through, do not let them blow over the fact that nothing showed up on your scan (that's quite common) some months i was in my doctors office every week trying to get answers.

Maybe do research into gps that specialise in reproductive health, it wasn't until I found a gpthat specialised in reproductive health that I finally started getting somewhere.

Good luck! I hope things get better for you.

Hi sorry you are going through this. I had a ultrasound scan and MRI which did not show up Endometriosis.

Go back to your doctor, tell them how much pain you are in, ask for a referral to gynae for a laparoscopy.

It’s your health and you have to put up with this pain so keep going back or see a different doctor until you get what you want.

Hope you get answers soon 💕x

My doc thought I had appendicitis that is the only way I had a lap but turns out my appendix is stuck to my bowel with endo.

They couldn’t remove any because the surgeons were not bowel or endo specialists so it’s all still in there.

Just say you want a lap doing. Good luck

Hi there,

I haven’t been on here for ages, but thought I’d share my story incase it helps.

I’ve had chronic pain for 8+ years and about 5 years ago I really felt it was endo because it got better/ worse at different points in my cycle. Pain was predominantly in my hip. Now at the point where my other joints are hurting too.

I had scans, laparoscopy, mri & all came back normal. I was devastated too. I even overheard a nurse after my lap saying ‘these girls need to get a grip & manage their period pain. We just used to get on with it!’

I felt like everyone thought I was lying. Anyway, fast forward.. my pain got to horrendous levels during my 2nd pregnancy, so GP referred me to physio for pelvic hurdle pain. When the physio assessed me she saw that my hip was completely out of place & couldn’t believe I’d been getting on with it like that. Physio ended up referring me to assessment team who did more tests which all came back negative but they referred me to rheumatology. 5 minutes with her and I’ve been diagnosed with Hyper-mobile Ehlers Danlos Syndrome. (A connective tissue disorder that causes chronic pain because of loose joints and lots of other things inside being loose!)

It’s like the final piece of the puzzle for me because it explains so many other things too; dislocating toes, bruising easily, digestive issues. I didn’t consider all of these things before because my hip pain was so severe, the other things seemed irrelevant.

Anyway, my point is, don’t let anyone make you feel crazy.( I got to the point where I was wondering if I was making it up!) you know your body & deserve to be listened to. So even if it’s not endo, be open to all other avenues until you get your answer.

Hope you get sorted!

Start a pain diary. If you have an abnormal cycle download a period tracker app I had 14 days on 10 days off before I was bleeding constant. I continually went to the docs and pushed for referrals...it took 8 years, treatment for CIN type 3, internal external scans etc finally I had a laparoscopy in March and got my diagnosis. Treatment didn't help so I pushed again for treatment I had injections to stop my ovaries from working eventually 5 weeks ago I had both ovaries removed. Keep pushing even if you don't have the energy even if you feel no one's listening keep pushing you know your body xx

Hi Jemima, my scan didn’t show endo either and the GP tried to fob me off too. I made another appointment and asked for a gynae referral which the GP begrudgingly agreed to. Once I sat with the gynaecologist and went through my symptoms he immediately listed me for laparoscopy.

The laparoscopy showed advanced endo throughout which had fused my bowel to my uterus and covered my ovaries completely.

My advice is to go back to your GP and actually request a referral. They are unlikely to deny you if you ask outright based on your ongoing symptoms.

Good luck hunnie xx

Ultrasound scans do not show Endo (unless there is a lot on the ovaries, where it can sometimes be spotted with a tranvaginal probe).

It is well-known that ultrasound is not a reliable test for showing Endo.

Go back to your GP and insist on a lap. Ask to see a copy of the 'protocol' that they should have, which lays out the procedure to be followed for the investigation and treatment of Endo! Only laparoscopies are the accepted diagnostic tool for locating and identifying Endo (there are different sort of Endo, and not all Gynaes, can recognise them all) , in all the 'difficult to access' parts of the abdominal cavity, where it can be found.

Largely, ultrasounds just rule out other conditions.

Hope this helps, Gritty.

Book an appointment with your GP. Check online for any services that specialise in endo and related issues in your area. When you see your GP ask to be referred to another Gyno based on the information you discovered. If you need it, ask for stronger prescription pain medication. Next, start a diary of ALL your symptoms while waiting for your referral to be processed and an appointment set. Even things you think may be unrelated. Tiredness... Insomnia... Other parts of your body that you experience pain in (such as Headaches), cold hands/feet, etc. They could be endo related or symptoms for something you are also experiencing due to endo (like anemia, for example). If you have not received help, which means finding out what is wrong and how to help ease your suffering, you are not finished - regardless what any Dr or specialist says. If one doesn't help, you need to find another who will. Don't give up - I know first hand how hard it is when you know something is wrong and no one seems to care enough to get to the bottom of it. It is hard, but you can keep going and find help. Don't give up on yourself.

Did they consider hyperplasia & dysmennhorea[ painful period] for which pill assisted then HRT

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