I’m a little bit lost...I’ve been seeing a doctor(s) for about 4 years with severe pelvic pain, heavy bleeding, irregular bleeding and bloating etc all endo symptoms. Multiple hospital stays and too many tears. I’ve had ultrasounds that have been clear and sometimes cysts. I had a lap last month and was told I was clear of any endo. My doctor is a specialist I think but I just have a gut feeling somethings been missed. I’m 24yrs old and dependent on tramadol and now I have oramorph at home when it gets too debilitating. I had the Mirena coil fitted too and been told to expect pain but this can’t just be from that?! I honestly don’t know what to do next. I’ve fought for an MRI and it’s happening next week but it’s only looking at my back because I said the pain radiates there.
If you’ve got this far I appreciate it and any help/advice is highly appreciated. My mental health is taking a huge hit from this all. I feel like I’m going crazy or something like being told it’s all in my head
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Beth1002
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Sadly I don't have a proper answer for you, but I'm sending my sympathy and a virtual hug! In a similar position myself, negative lap, persistent endo symptoms. It's a nightmare and I wouldn't wish it on anyone.
There's lots of things that can cause pelvic pain and won't necessarily be seen on scans/laps, and there's likely things that doctors don't even know about yet (thanks to the lack of research into this area) and unfortunately lots of women suffer from pain of 'unknown origin'. Hopefully they will improve this in the future but that's no help to us now!
You could still have endo that's been missed - the teeniest spots can cause the worst symptoms. Push for another specialist opinion if you feel uncertain. It can't hurt.
And look, no matter what happens, please don't think this is all in your head. There's no such thing as pain that's all in your head. Years of medical gaslighting has us thinking this way, but it's absolute nonsense. Hold your head up high, don't let them blame you for medical science not being good enough to tell you what's wrong.
If its affecting you mentally now, please seek help with this. Poor mental health can make the pain feel worse and you end up in a downward spiral. I've had some counselling and am on an antidepressant and it's really helped me cope. The pains still there but it bothers me a lot less.
Hey, I am glad the counselling and anti depressants helped. If you want to know of natural things that help reduce endo symptoms feel free to send me a private message. I've done a lot of research and am happy to share it xx
Your journey sounds similar to mine 🤦🏻♀️ I’m 26 and have been chasing and begging for help for five years and still have no answers with a negative laporosocopy. I’ve also had negative MRIs and no doctor has properly bothered to investigate and it’s a really tough fight. I’ve got a painful left ovary that was normal on laporosocopy and clear of cysts and now has a few cysts... and that’s not the cause of my pain apparently even though I literally cannot even put pressure on that ovary. It’s a joke. It makes you think you’re crazy. I tried other methods to help in the mean time and I do advise you to do that, too. I was going to lose my sanity until I sought holistic therapy. I’m not better and I don’t have answers... I’m just surviving basically because I have no choice. My dms are open if you’d like to connect, I find it hard to find other young people I can relate to.
You can ask for another laporosocopy but it would need a year plus wait as I’m aware because they don’t do it straight away unless there’s something they know they’re going in for
I also had a spinal MRI, two, with two different results. One said nothing was wrong, another said that there is some disc bulging at l4l5. The one that said there was some nerve compression and disc bulging was done privately. The nhs can be an actual joke. And then when I bought my scan to the nhs and said this is contributing to my pain in my pelvis they dismissed me and said not the cause.
It saddens me to hear that women are still having to fight to get a diagnosis for pelvic pain especially if it is suspected endometriosis.30yrs ago I was having all the same symptoms as yourself, and had endless tests done. Back then consultants were generally male and had little sympathy or understanding of what I was going through.
Fortunately for me I saw a women consultant and after further tests I was diagnosed with severe endometriosis and a tilted womb.
I had my children at a younger age and due to the debilitating pain I had a hysterectomy aged 26. I felt reborn!!!!
You need to have your voice heard and I would recommend a second opinion even a change of hospital!!!
Unfortunately for me I went on to have ongoing health issues but I now have an all female team of doctors who work together with me on what is the best ongoing treatment to manage my pain.
I wish you good luck and hope you get the help and care that you need to move on with your life. Stay strong!!!
Do get a second opinion and if you can manage it go for a private consultation.It was not too costly considering that I had a very thorough examination and excellent, detailed feedback which helped many of my fears after 3 vaginal operations.I saw Miss Wykes at Nuffield Health in Haywards Heath who was really helpful.I'm older than you but have had similar trouble and only found one good Dr out of many visits and telephone appointments.Nobody should be in pain.A mixture of pain killers help me daily including Co- codamol and paracetamol.Gentle walks,warm baths,taking things very gently and some yoga stretches and yoga breathing to help relax and ease the pain.Take care Sxx
I would ask for the pictures and show them to another endometriosis specialist. They can only review the areas photographed but they at least can determine of those areas are clear. Is the person you went to at a bsge endometriosis centre? (You can check the website if you're not sure) If not I would pick a consultant at a bsge centre (if there's one nearby) see them privately and show them the images. You can check their reviews online to determine which one to see. It will cost a couple of hundred but will give you some peace of mind.
If you have a follow up you can take pictures with your phone of the pictures from your op
The other question is to ask where they looked. They should look beyond your gynae organs
I should have also said if you want info on natural things that work for endometriosis symptoms, feel free to send me a message, I've done a lot of research xx
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