Looking for advice on what to do next?

[Suzileverell]

Hello everyone, I apologise in advance for the long story.

I have been suffering with theys symptoms for several years now and they are not getting any better. If anything I'm getting worse and worse and I have no diagnosis.

My symptoms include, really bad pelvic pain, extremely painful periods, sciatica in my left hip, lower back pain, painful sex that is so bad I've had to give up having it, extreme fatigue, UTI's, IBS, blood in poo, adhesion and if it wasn't for the pill I'm on I would have one long period that lasts for months.

All of this has caused me to lose my job destroyed relationships and I have had to give up my favourite hobbies and sports all because of the stupid symptoms that are taking over my life.

I had a laparoscopy done last year to look for endometriosis but nothing was found. They did say my ovary had got stuck to the pelvic floor wall and that they had moved it back. I then got sent home with no follow up appointment and they told me the pain should all go away now. But it hasn't if anything it's got worse. I feel like such a fraud because I was convinced it was endo and that's what I had told the gyno.

I have been back to my Drs since and I have had a colonoscopy done that came back clear. I have also had several lot's of antibiotics to treat pelvic inflammatory disease but unfortunately I haven't noticed any difference. My Dr said that I have scaring around my ovaries that is causing all the infections which then causes more scaring, adhesion and more infections and that it's a vicious circle and there's no cure. He has said he's going to give me another referral back to the gyno so this time I have asked for a different one because the other one didn't really seem to understand or know.

If anyone has any other ideas on what to do to help give me some relief of my symptoms it would be much appreciated? Or if anyone is going through a similar thing I would be interested to hear your story's?

I'm currently on the pill which I take continuously for 3 months then have a break. I also take mefenamic acid 3 times a day with paracetamol inbetween to help with the pain. I have tried other painkillers but they make me feel really sleepy. I'm also extra healthy when it comes to eating and have spoken to a nutritionist about it and have been given advice on that. I also have physio therapy for my pelvic floor. Unfortunately it's not working.

All I want is to know what's going on with my body and have some relief of symptoms.

Any help or advice would be amazing. Xx

[suzie44na]

Hi, I would ask for scans MRI etc, this may give you a diagnosis. I have low back pain and it has turned out to be Tarlov cysts, which are agony. These showed up on my MRI scan, most doctors dismiss them but doctors that specialise in them don’t. If your doctors don’t mention scans ask them. Make sure your not anemic this can cause fatigue. Hydrotherapy can help soothe pains a bit or hot water bottles etc, ask if you can go to a pain clinic. Hope you get a diagnosis soon, all the best

Suzie

[Suzileverell in reply to suzie44na]

Oh that's a good idea I will ask for an MRI next time I go. I've had lots of ultrasound scans in the passed that have shown PCOS. But my Dr told me they shouldn't be causing as many symptom and pain as this.

They have given me blood test before to check if I'm anemic and see if I'mlacking in anything but they all came back clear. The Dr just said it's probably the pain that is making me tired.

That's interesting I've never thought of hydrotherapy before. I know it can be an amazing thing as I've seen it being used for animals. I will also ask about the pain clinic because anything to help is worth a go.

Thank you so much for your reply xx

[Katieeee in reply to Suzileverell]

Your symptoms are just like mine 😰 I have chronic lower back pain, pelvic pain, hip pain, leg pain, groin pain and sometimes lower abdomen pain. I’ve been treated for kidney infection, for PID, told it’s hormonal imbalance, told it’s VIRAL!! 👎🏻 I have had numerous pelvic/transvaginal scans all but one was totally clear and even the one that wasn’t was very minor - small amount of free fluid found. I’ve had so many antibiotics which has now given me chronic thrush! Blood tests normal, urine mostly normal (sometimes show small trace of blood/protein). I live in the doctors and just about holding down a job and a family. I want to push for MRI too now x

[Suzileverell in reply to Katieeee]

You do sound just like me!

After all the help on here an MRI scan definitely seems to be the next thing to push for.

You poor thing it's so hard trying to work when you feel like this. I have moved on with work and I'm working more part time and just taking it easy. Because full time was to much and I was calling in sick so much I got singed off.

Hope you get you MRI as well. Xx

[tigerlily27]

It does sound so much like endo. So to be so convinced it's that, then have a clear lap must be devastating... It's something I really dread. I have seen on here though that lots of girls had had a clear lap but then had another and it has been endo. Do you feel it still could be?was your lap done by a general gyne or a bsge endo specialist? Can be easily missed with just regular gyne. But also why was your ovary stuck to pelvic wall? Usually again that's endo related?

I really feel for you and I hope the other ladies on here can offer more help! But don't give up!

Sending you lots of love

X X X X

[Suzileverell in reply to tigerlily27]

Thank you for your reply,

I had my lap done under a general gyno because at the time I didn't even know about specialists. I now really regret going with them. But when I told my Dr he said the endo would of come up with a general gyno and it shouldn't make any difference as to who does it because they would of seen it no matter what. He also told me that no one knows why my ovary was stuck. I was told it could be down to anything like an infection, scaring and then he said endo. So none of it makes sense. I did ask about seeing a specialist but he said having another lap could make things worse and I do understand that. I just feel that maybe it was missed because like you say there seem to be alot of stories of it being missed. I think after all the advice an MRI scan seems to be the next step

Xxxx

[pizon]

so sorry for your pain and suffering I don't have any of your symptoms except the left hip/sciatica pain that I have had mri and cat scaned my chiropractor seems to give me the most relief I will pray for you I do agree an mri is in order

[Suzileverell in reply to pizon]

Thank you! MRI scan seems to be the next for me. X

[costagran]

I've had the same pain as you for 7 years now,including sciatica but too old for periods..Recently i thought i'd discovered the route cause when i read the results of my MRI..Pelvic congestion syndrome. Basically its a varicus vein in the pelvis..mine was described as small..Apparently so small that the gyno did'nt even mention it..So i found myself a forum on this condition and i'm afraid the posts i read say that after treatment they were in worse pain..The treatment seems a bit random and hit and miss.It includes fitting coils or embolization..Anyway get your MRI first.

[Suzileverell in reply to costagran]

That's interesting gosh I've never heard of that before. Hope you get sorted! Thank you I'm definitely gonna go and ask for one. X

[Konagirl60]

I do not have your symptoms. You ARE in very bad pain...I believe you.

If you don’t get anywhere with doctors ( and they DO misrepresent people now ) hire a registered nurse consultant. My own saved my life.

Funding for healthcare is no longer sacred....here in Canada, people die waiting for an MRI. It’s sad...

[Suzileverell in reply to Konagirl60]

Thank you, I have been thinking about that because the NHS Drs just don't seem to have the time to listen and look into all of the symptoms.

That's so sad people have to wait for something so important. xx

[costagran in reply to Suzileverell]

It seems to be a fact of life nowadays.NHS GP's and specialists give the patients an allocated appointment time.If you go over that time,there attitude changes as they will get a backlog..On the other hand private doctors are businessmen who make a good living..I'm saying no more..Oh when did i turn into this terrible cynic.

[Konagirl60 in reply to costagran]

You have every reason to be a cynic....the pledge to DO NO HARM is a joke! It is no longer being honoured.

[Simo7]

Hi Suzileverell & Katieeee, I'm not a gynaecologist but both of your symptoms sound so much like endo'. Like Isabellaoflockseley suggested, see a BSGE specialist. Fluid and stuck ovaries & adhesions in fact every symptoms you've both mentioned I've had over 24 years. I had to ask the first surgeon to look for endometriosis, it can be tricky to find and general gynaes tend to go by text book black powder marks instead of looking at the different formations/colours of endo'. Push for a specialist!!

Good luck to you both xx

[Suzileverell in reply to Simo7]

Thank you for your reply! I feel endo seems to be the only logical explanation for all my symptoms. It'svery frustrating to not have a dyagnosis. I'm going to mention it when I go back and see my GP. Xx