So much pelvic pain, any advice?

[Juliet_22]

Hi All,

I've been having pelvic pain on and off for many years, but lived fine with it before.

However, in the last 5 months, it's gotten worst and in the last few weeks, it's gotten even worst again.

I've already done:

* All types of gynae assessments from a scan, to PAP and other tests, to colposcopy to a biopsy. I've seen top gynaes and they said it's unlikely to be gynae related. Normal period. Laparoscopy has not been done, I'm too anxious to have it.

* Seen hernia specialist, not that

* Did extensive gut testing, not that

* Saw chiro, not that

* Did MRI, but a long time ago, 5 years ago. Nothing major was found, and I nearly had a heart attack inside from anxiety as I'm colastrobhobic! So MRI is not easy to do again, or CT scan.

The doctors are puzzled, but 5 years ago a gynae picked a it enlarged pelvic veins on an ultrasound scan, though it hasn't been picked since.

The pain in right in the groin area and it's a pulling type of pain, any time of the cycle. Lately, it also feels like my pelvic has been numb. It's worst when I sit or lie down. I can walk and exercise fine.

I don't take pain killers for it, I bear the pain, but it's so intense.

I also have hypothyroidism (managed by medication) and Hashimoto's (slight).

My diet and lifestyle is very healthy. I've seen so many doctors about my issue...

Do the beautiful people of this forus have any advice for me as to what I could do to get to the bottom of things please?

[arTistapple]

Juliet_22 I have been following you on the another forum so this post came up. I went to answer it with something and it’s then I realised I was on a completely different forum. Just wanted to say that even in five years MRI machines have come a long way. Claustrophobia can be much less of a problem now. Perhaps a dumb question but have you considered muscle issues in the area? It’s curious it’s worse sitting than being active. Thyroid hormones cause all sorts of muscle issues.

[Black_Cat1 in reply to arTistapple]

Really I did not know about the muscle issue and Throid, thank you.

[Aprilbaby24 in reply to Black_Cat1]

Hi, I have read your reply to Juliet, I suffer really badly with pelvic pain also and it’s equally bad sitting or standing. Interesting about muscles and thyroids, nothing has been mentioned to me about these things. Currently taking Duloxetine and codine to get through the day and on the sick from work!

[Juliet_22 in reply to Aprilbaby24]

I totally understand you! Thankfully, I don't even notice it anymore. But we had to do a few things: moved to a warm climate as cold weather doesn't work for my thyroid, which helped me balance my thyroid THANK UNIVERSE! Since then, I've been hardly noticing it, what a relief, I was crying from pain on some days.

So balancing thyroid was key, but for that we had to move to a warm climate as nothing was working in UK to help, and I tried everything.

All the best with your recovery!

[Juliet_22 in reply to arTistapple]

You're right, I should give MRI a go. Interestingly enough, my pelvic pain is much worst when my thyroid is not balanced. Yes, an unbalanced thyroid can create so many issues in the body!

[Skye22]

I have levator ani syndrome which causes painful spasms in my pelvic floor and have issues with my bowel and bladder.I saw a specialist womens physio who examined my pelvic floor and referred me for further tests resulting in diagnosis.

Physio does external/internal vaginal trigger point therapy which helps a lot with painful spasms and makes sitting down less painful. I also get botox injections Into pelvic floor 3mthly this really helps with spasms.

If getting a laparoscopy could help you with getting a diagnosis I would recommend procedure you would be sedated and post op you would be a bit crampy.

Hope you find out what is causing you issues and you get the treatment that is right for you. Wishing you good health.

[Juliet_22 in reply to Skye22]

Thank you so much for this, I will need to find a good physio in the area specializing in pelvic issues.

[Jcpud]

have you been checked for pelvic congestion syndrome? Not all of your symptoms correlate but it’s something my pelvic physio suggested I have checked out when my pain seemed cyclical. (I don’t have it) also wanted to mention that my MRI facility offers sedation for those of us with severe claustrophobia. It’s something I plan to do if I ever need another one. Maybe you can find a place that offers it as well. Good luck. I’m so thankful that my pain has gradually lessened and doesn’t appear to be anything serious. It seems to be muscle related so I just have to take things slow and easy so I don’t aggravate the muscles in my pelvis.

[Juliet_22 in reply to Jcpud]

I asked the hernia doc about it and he said gynaes check for it. I've been to see 4 different gynaes lately, none of them said it was that. What tests did you do to check for it please?

[Jcpud in reply to Juliet_22]

had an ultrasound, CT scan and MRI to rule it (and other things) out. I hope you get some answers.

[Agnessa]

Hi Juliet.

I’m having a pelvic pain for 2+ years now. Most of my symptoms related to a sitting pain, rectal pain and some issues with bladder. I visited so many doctors, most of them had no idea what is going on with me, often feeling abandoned. I have done an MRI, which didn’t show anything abnormal. I was in so much pain, lost 12 pounds in 2 months, literally lost hope that my life will be normal again. Finally a year and a half ago I was diagnosed with the pelvic floor dysfunction due to muscle spasm and after that I started looking for anything that could help me with this condition. Btw, I have a Hashimoto as well and all those troubles started when my TSH was unbalanced.

The life changed after I read the book by Dr Wise and Dr Anderson “A headache in the pelvis”. This book is a “bible” for patients who suffers from pelvic floor muscle dysfunction. You should read this book because you will find an exact story experienced by Dr Wise who found a method that helped him and other thousands of patients to become symptoms free.

I contacted Dr Wise via email and he called me back immediately. In a month I went to his clinic in California for 3 days, it was March 2022. I was taught his method called Wise-Anderson protocol and for the last 17 months I’m following this protocol at home every single day. I believe in his method now, because it gave me a hope that I can return to my normal life without drugs, surgeries, injections, the hope that I almost lost. I started feeling better in about 2-3 months of following the protocol. And a year later my life is almost normal again. I wasn’t able to sit for more than 15 minutes a year ago, last month I went to Europe on vacation and sit in the plane for 9 hours. My symptoms are improving. The sitting pain is still there but much much less intense. My rectal pain is gone.

Also, they recommended me a cushion pillow that I ordered from the theraseat.com site. It really helps with the sitting pain. I’m using in in the car or anywhere if I need to seat for more than an hour.

You can check the website pelvicpainhelp.com where you’ll find a tons of information. There is a combination of external and internal trigger points releases, some stretches and the most important the relaxation that you have to do daily.

Hope you will feel better very soon! Good luck!

[Juliet_22 in reply to Agnessa]

Thank you so much for taking your time to share all this, I'm beyond grateful for reading your post. So glad things are improving for you. How interesting that your issues have also started when your thyroid was unbalanced. I am going to order the book you've suggested and start on the exercises as well. Thank you, thank you!

[Aprilbaby24 in reply to Agnessa]

Thank you for your recommendation of the book, a headache in the pelvis. I’ve bought it on my kindle and seems very informative 🥳

[Sunrach]

Please look up ACNES which stands for abdominal cutanous nerve entrapment syndrome.

I have this and can relate to your symptoms

Best online resource is "pain spa" info. I've received private treatment by Dr Krishna based in Bristol UK. 😍

[Juliet_22 in reply to Sunrach]

Thank you, how did you get it diagnosed in the first place please?

[Sunrach in reply to Juliet_22]

Look up carnetts test. I didn't get diagnosed under NHS. It was only when I had my first video appointment and showed the consultant pictures where I had marked my body with a cross everytime I experienced pain. If you can locate your pain with 2 fingers and pain remains in the same area or follows a little line then worth looking into this as an possibly condition.

[Juliet_22 in reply to Sunrach]

Thank you so much, mine is right in the front groin area vs the abdomen itself, but yes, same spot and yes to 2 fingers did you need to go and see the doc, or did it all via a video consult?

[Sunrach]

Unfortunately MRI doesn't pick this up. I contacted pain spa after reading the info and paid for a private video consultation. I would defo take pics of x areas. Its worth researching. Happy to answer any further questions

[Juliet_22 in reply to Sunrach]

How interesting that it doesn't pick it up! So I take it you did all kinds of tests, inc the MRI, found no answers and kept on searching? May I also ask where is your pain located? From what I've read it's more of an abdominal area issue. Well done on finding the clinic!

[Sunrach in reply to Juliet_22]

Yes kept having loads of tests including 4 x ultrasounds, ct scan with contrast.... nothing

So my pain points were where the cutanous and inguinal nerves are positioned below belly button down and in my case on the right hand side. See pics. But you are right they do still appear in abdominal rather than pelvic region.

[Peaches67]

Do you think it could be nerve rated? I have Pudendal Neuralgia. You could look up symptoms on PudendalNeuralgiaHope website and see if your symptoms fit. Although you have lots of nerves in your pelvis that could get trapped.

[Juliet_22 in reply to Peaches67]

Thank you for pointing it out, from what I've read and the location of it, it could well be that. What are your symptoms and does it bother you at thing? For some reason, it's been bothering me at night, I still sleep with it, but wake up 1-2 times and feel the pain in the groin area.

[Peaches67]

My symptoms have been kept down with medication but when it was bad I couldn't sit for long and I was working at the time. My pain was mainly in the perineum area, rectal pain, back and coccyx, muscle spasm really bad that took my breath away, numbness and warm and cold skin sensations. Urinary urgency and stabbing buttock pain. Bowel movements always made the pain much worse.

[Juliet_22]

Thank you so much, I will look into it, I haven't heard about it before. Please feel free to share your details as well where I can learn more.