Hi all, first time on this site. So I'm currently undiagnosed but all symptoms seem to point to endo. 8 years ago I had constant pain in my pelvis all month round.i was constantly getting told it was water infections or ibs which I knew it wasn't! and after many many different docs appointments I finally got a referral for a laparoscopy.
A few days before my appointment I found out I was pregnant so op cancelled. most pain disappeared until my son was around 2ish years old and then the symptoms started coming back again.
This time it's pelvis pain, blood clots, the most horrific pain shooting through my bowel, struggle to sit down at times, lightheaded, dragging on insides when going for a wee... The list goes on.
Back to square one at docs. Sent for scans all clear yet again. Fobbed off with water infection antibiotics. I need a gyno referral not antibiotics! My doctors are sooo hard to get hold of I could actually cry out of frustration Today!!!!!!
Is anyone else in this situation??? I really want to push for a laposcopy to find out for sure.
If it's not that then what the bloody hell is it and why won't anyone help me 😤😔
Help please guys xx
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simples123
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So sorry to hear what you’re going through and the pain you are in! I had the exact same near enough symptoms, constantly on antibiotics for UTIs and getting fobbed off by doctors and asked if I was stressed 😂🙄 (yes because you aren’t taking me seriously)
My advice even though it so frustrating and the Drs can be so invalidating is to keep going back to them and asking for further tests, the more you keep coming back the more they take you seriously! I felt really embarrassed going back a 4th time for one particular ‘UTI’ but I couldn’t take any more of the pain and I’m so glad I did! I got a referral for a scan, which found a cyst and led to my hospital referral. I’ve now had my lap and confirmed stage 3 endometriosis and removed a cyst. I was so happy I had it in a weird way because it meant all the pain wasn’t in my head like I was lead to believe by so many doctors for literally years!
I really hope you get taken seriously soon and can use this forum for support! I was so glad I found it! Take care x
Thank you so much for your reply. The doctors are so frustrating. I rang them yet again today to beg to see a doctor. They are going to ring me this afternoon 🙄I'm going to really tell them that I need to see a gyno. Do u think that's the person to push to see?
Iv not got any cists, or other growths that have shown on scan but from what I hear if it's endo it more often than not doesn't show on a ultrasound.
No worries! Yes I would definitely ask to be referred to gyno! The straighter you are with them the better and will hopefully get you want you need! Keep us updated! Hope they refer you! Xxx
Have you tried telling GP directly to refer to gynae rather than ask?
Through 2019 I was back to GP so many times, even after I started antibiotics that they weren’t working. I ended up paying to see gynae. One thing I’ve learnt is don’t ask but tell what you want. That way if they say no you can ask why. There isn’t any reason they can give that makes sense regards your health. Use the econsult so you can note that you want to discuss a referral.
Thank you. Went to see gp today. I really had to beg him for a referal. He was just do hard to convince. His given me mefenamic for now until referal comes through (7 months he said)I think it's absolutely discusting how they can treat people. It's like they don't believe my symptoms.
That’s great 👍 I know it doesn’t seem like it with all the waiting. Once you get an appointment through you can call about cancellations. They do appear frequently.If the meds don’t work, consider going back and asking for an urgent referral to the pain clinic.
I seem to go from one department to another, after hysterectomy I’m still getting abdominal pain. Pain clinic say it’s residual nerve pain. No actual tests for this, just more pills. Gastro isn’t interested at all, not even IBS. Dieticians are pretty useless. I’m tackling it from sleep clinic perspective from using CPAP.
What I’m trying to say is don’t give up 🙂 it isn’t in your head and you have a right to be seen, obtain a diagnosis and treated.
Most conditions can’t be seen, Drs seem to forget that. It eats into their budget.
Definitely understand sweet, I've been kn the same boat for years. Having my youngest made things calm down for me too, until he was about 1/2 then things began escalating again, I went on the pill until he was about 3 and this last 2 years has been hell in a hand basket lol. I've I've to my GP so many times over the years that I should pay rent! I finally asked them to refer me to gynecology after ruling out things like fibromyalgia, lupus and other auto immune diseases. But the gyne was useless too refused to investigate and actually made me cry! So, I've paid for a private consultation with a BSGE registered endometriosis specialist, it's costing me £170 just to see him but honestly I would pay anything to be given some answers.
I agree with the other people who have responded, ask them to refer you to gynecology directly love. If they say no, ask why. Or if you can afford it I would go straight down the private route and get yourself some answers faster, you could always go back to the NHS after you have a diagnosis xxx
Thank you so much for your reply.I have been looking into private prices out of desperation. Saw gp today. Had to beg for referal but finally pursuaded him and now 7 month wait at least but at least I'm on the list. His given me mefenamic for the meantime. He was so patronising. He said his not convinced that it's endo because you only get pain when u bleed with endo!! Urg that's not what iv heard I think he needs to do a lot of research. Everything he told me was different to the research I have done over the last 8 years. He tried to put me back on contraception but I said no! I can't just put a plaster on it I need answers.
Have you been to your private appointment yet? Do you know what it will involve? Xx
Oh love im so sorry, some GPs can be real patronizing a***holes lol. Yup you're definitely right to say that you don't want to just put a plaster on it, I told my gynecologist the same thing when he suggested I go on the pill and see them in 6 months. It's not fair to leave us in pain just because we have something that is difficult to diagnose, I know their waiting lists are crazy long at the moment but pretending that there is nothing to investigate is negligent and damaging to womens health.
Does the gynecology team you're going to have an endo specialist? I did a Google of the gynecology team at the hospital I was referred to and found none of them specialized in endo, I still went ahead with my appointment and tried to think positive but I was proved right when I had my appointment and they wouldn't do anything to help me. So if you think you'll get the same reaction babes then going private would mean you don't have to wait 7 months to be told they won't do anything. But obviously I would understand wanting to see how the NHS appointment goes first because I did the same, I would just hate for you to wait that long to get no help. Do lots of research on them and make sure you're armed with info!
No I've not had mine yet, it's on the 7th June I'm counting down the days lol ovulating currently and it is like I've been run over. I don't see how doctors can think that me being bed ridden for 2 weeks out of 4 is okay! Crossing my fingers this next one will be mire interested in giving me answers as opposed to just throwing pills at me, or telling me I go on the internet too much lol. He even suggested my GP hasn't investigated other issues fully before looking at endo, which made me laugh because I've been tested for so many conditions like lupus, MS, chrons, fibromyalgia, arthritis, IBS lol so I think they definitely investigated fully, he just didn't read my notes! xxx
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refused to investigate and actually made me cry! So, I've paid for a private consultation with a BSGE registered endometriosis specialist, it's costing me £170 just to see him but honestly I would pay anything to be given some answers. 
I'm counting down the days lol ovulating currently and it is like I've been run over. I don't see how doctors can think that me being bed ridden for 2 weeks out of 4 is okay! Crossing my fingers this next one will be mire interested in giving me answers as opposed to just throwing pills at me, or telling me I go on the internet too much lol. He even suggested my GP hasn't investigated other issues fully before looking at endo, which made me laugh because I've been tested for so many conditions like lupus, MS, chrons, fibromyalgia, arthritis, IBS lol so I think they definitely investigated fully, he just didn't read my notes! xxx
What is wrong with me??
I'm wondering whether anyone has suffered with the same problem as me? I have abdominal pain and constipation. 
Should I get a private pelvis MRI scan for endo or wait on the NHS?
Words of wisdom welcome 
Could this be Endo or Cancer?!!
