Sacrotuberous and other pelvic ligaments - Pelvic Pain Suppo...

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Sacrotuberous and other pelvic ligaments

EffieT profile image
44 Replies

Has anyone had issues with pelvic ligaments causing pain in the pelvic floor? I've been trying to get a diagnosis for my pelvic floor pain for almost 3 years. Every "expert" has a different opinion. The pain doctor I am seeing is suggesting prolotherapy to strengthen my ligaments in the pelvis. I don't know who to believe anymore.

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EffieT profile image
EffieT
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44 Replies
suzie44na profile image
suzie44na

I have pelvic pain but my is because of Tarlov cysts, seen on my MRI scan. Have you had MRI scan. Hope you get a proper diagnosis.Suzie

EffieT profile image
EffieT in reply to suzie44na

Thank you for your response. I have had an MRI but nothing showed up on it. I hope your issue has been treated successfully.

Konagirl60 profile image
Konagirl60

Can you describe your pain please. Is it burning? Where do you feel it the most?

When do you feel it the most?

Have you seen a physiotherapist?

EffieT profile image
EffieT in reply to Konagirl60

Thank you for responding. My pain is in my glutes and radiates into my pelvic floor. It is always there, burning sometimes but always achy and sore. It is worse when I lie down. I hope you are doing well. Happy New Year and stay safe.

SouthernSally profile image
SouthernSally

Did you get any relief? I'm beginning to think my pain is sacrotuberous too after years of trying numerous methods. I'm going to try yet another pelvic therapist who is also orthopedic. I hope you are feeling better.

EffieT profile image
EffieT in reply to SouthernSally

I am still struggling to get a diagnosis. I am now working with an orthopedic physiotherapist also. Do you have pain in your glutes and pelvic floor? My physio thinks it's my SI joint. Please let me know how you get on. Good Luck!

SouthernSally profile image
SouthernSally

Mine is lower buttocks near sit bones and pelvic area. I've had pelvic PT a few times. But the next one also does other PT and I'd like her to check my ligaments and Piriformis muscle. 6 or 7 nerve/steroid injections did nothing, including one for ischial tuberosity where I have pain for sure. A doctor checked there for tissue damage with ultrasound. He also checked my hips and gave me hip injections. Tissue is good. No response to those injections. Everyone says I have a complex issue that is tough to relieve.

I saw a neurologist last week who put in an order to a neurosurgeon to discuss a stimulator. The neurologist thinks it's pudendal but I'm not certain. Internal and external injections didn't help and other ligaments, muscles and nerves cross under it. I'm getting a second MRI this week. My last one was in 2021.

The SI joint has ligaments around it. I'll have that checked too. I've had various diagnosis that are all vague. Pudendal neuralgia, hypertonic pelvic floor, etc. With no help from pelvic PT or injections, who knows.

I hope you get a diagnosis that's treatable. I had a colonoscopy recently that was good but I went in half hoping they would find something that could be treatable. It's horrible to get to that point mentally.

EffieT profile image
EffieT in reply to SouthernSally

I know how you feel. I've been shunted from Specialist to specialist and had umpteen MRIs. Finally saw a Neuropelveologist who examined pelvic floor muscles and all pelvic nerves. He said I had a hypertonic pelvic floor esp Obturator internus, no nerve issue. Referred me to a Physiatrist to see what was causing the Obturator to spasm. So, here we go again. More tests. The shot I had for diagnosis of Pudendal nerve two years ago actually made things worse, so no more shots for me until I know it's not trial and error.

I do hope you get some relief. This type of pain is so awful. It really affects one's life horribly.

SouthernSally profile image
SouthernSally in reply to EffieT

And I do hope you get relief too. I keep doing some of the pelvic stretches I know. They don't make things better but are somewhat calming. You'll have exercises you can do at home from the physiatrist. You might know you should not be doing kegels. If a practitioner wants you to do them don't.

Life is also difficult because there are very few people who know about my pain. I don't want questions or information from someone who is trying to find my cure. But it's very hard to explain why I don't travel much or sit in social situations for long periods of time. If I were to say I have back or hip pain I'll still be subjected to all of the "Have you tried...? " and all other well meaning but grating questions.

Heartof3 profile image
Heartof3

Oh I feel your pain, literally! I'm forever getting told different things & dismissed. I have had so much pain since the birth of my son 5 years ago. Firstly it was pelvic floor dysfunction, I worked with a physio for a year on my Pelvic floor, pain got worse. Then I had a prolapse so had a prolapse repare. Then I had to have scar tissue removed. My pains got worse, I was told I have a bladder prolapse, then I was told it's not a bladder prolapse, it's definitely my pelvic floor dysfunction. So worked with a physio ago, cyclical pain got unbearable. So finally had a lap. Was told I have adenomyosis but to ignore my diagnosis. After being totally dismissed & discharged & left confused & in pain, I went down the complaint route & am now waiting for a hysterectomy. Since last week I can hardly walk, pain is awful. I have now been diagnosed with a bowel prolapse, so been referred back to a different specialist. I could scream! It's physically and mentally draining isn't it 😣 xx

SouthernSally profile image
SouthernSally in reply to Heartof3

Oh my gosh that's awful! One thing after another and feeling worse. I'll scream with you! Is there any one of these practitioners whom you trust, who can help you navigate?

Heartof3 profile image
Heartof3 in reply to SouthernSally

Honestly, it's so disheartening. I had an amazing specialist who did the repair, but he sadly left. So now I'm sent back & forth to different one's. It's all been since the birth of my son, I had an endometrium infection that turned into sepsis.

I'm waiting to see another specialist now, I'm manifesting that this one gives me the right answers & help 🙏💜

SouthernSally profile image
SouthernSally in reply to Heartof3

It just takes one doctor! This one may be it! One positive outcome can have a snowball effect on the others.

Heartof3 profile image
Heartof3 in reply to SouthernSally

Soo true. Thank you xx

SouthernSally profile image
SouthernSally in reply to Heartof3

How are you doing? Which doctor recommended the hysterectomy and might you get a second opinion on that? Have they considered doing a D&C first?

SouthernSally profile image
SouthernSally

So my MRI showed tendonitis in the glutes. I'm seeing a new pelvic physical therapist next week, the only one in my area I have not tried. She also does osteo which the others have not. I want her to check my glutes, Piriformis, Sacroiliac joint and pelvic ligaments. I haven't yet received a call from the neurosurgeon to discuss a spinal cord stimulator but I need to put it back on the table. Having no origin, surgery, or trauma to explain my pain I'm at a loss.

EffieT profile image
EffieT in reply to SouthernSally

Interesting! My MRI also showed tendonitis in Gluteus medius but nothing else to explin the pain. I am waiting to see a physiatrist, who hopefully will do some real investigation. I'm not holding my breath though as I have been so disappointed by these experts. Let me know how you get on with your physio. I hear very good things about Osteopathy. All the best!

SouthernSally profile image
SouthernSally in reply to EffieT

Thank you! I'd like to also try foam rolling but first under the direction of the PT. I want to make sure I'm doing it in a way that doesn't make things worse. She also does dry needling which one of my pain doctors said could help. I hope you're able to get the physiatrist appointment soon!

EffieT profile image
EffieT in reply to SouthernSally

My physio also does dry needling into my hamstrings and glutes. It's very helpful for easing the tight muscles for a while. The problem is we have to find why this is happening! Try the dry needling. Anything for some relief!!

SouthernSally profile image
SouthernSally in reply to EffieT

I've had pain since 2017, worse since 2019 which came on gradually. Driving over 2,000 km in Australia plus 17 hrs of flying I'm sure didn't help!

EffieT profile image
EffieT in reply to SouthernSally

No, all that sitting might have added to your pain. I do hope your new Physio works for you. I'm not having much success with Pelvic floor physio but am getting more relief from my orthopaedic physio who does dry needling. This makes me think my pain has muscular or ligamentous origins.

SouthernSally profile image
SouthernSally

Its wonderful the ortho is putting you on the right path! If it helps me that would make some sense of the fact that not one nerve block worked in the slightest. I began filling out the new patient forms and they ask about goals for treatment. I said I’d like at least a 50% reduction of pain. I would consider that a success.

EffieT profile image
EffieT in reply to SouthernSally

Absolutely! Any reduction that would allow you at least some relief so you can have some kind of normal life. When is your first appointment?

SouthernSally profile image
SouthernSally

This coming Thursday. I'm updating my Pain Diary to submit with the new patient forms. I keep track of therapists, doctors, prescription and OTC drugs I've tried, tests, injections, diagnoses, pain shifts etc. It's too much to remember.

EffieT profile image
EffieT in reply to SouthernSally

Yes, so many doctors, therapists and appointments...I've lost track too. Good luck for your appointment on Thursday. I really hope you get some answers. Please let me know how it went.

SouthernSally profile image
SouthernSally

I saw the new PT yesterday. A straightforward lady, saying, I'm not gonna lie to you. Your situation is tough. Let's give it 4 sessions to see if any improvement.

With physical exam she found tight piriformis and hips, and that I clench my buttocks. She gave me 2 exercises with a tennis ball, sitting and against the wall. Previously I've done a few lying down but it was too much pressure. She also said the pelvic stretches I do are fine to continue.

She suggested getting hip x-rays. Interestingly she said she'd much rather get a hip replacement than a spinal cord stimulator! I tend to agree but I don't think any x-ray would show the need for it.

She also recommended a gyno she works with for checking and working on hormones. I've wondered about hormones myself. I'll give the PT a go before seeing her. I also have a consult in a few weeks with the last pain doctor I saw. He would probably do a piriformis injection knowing what the PT found. I'd just like to handle it all a bit sequentially so we would know what specific action might give relief.

How are you? I found another PT on YouTube you might want to check out, Kim Vopni. I'm not going to do any other's exercises for now but she looks good.

The fight continues!

EffieT profile image
EffieT in reply to SouthernSally

Your new Physio seems to be very practical and honest. Have you had an MRI of your hips or pelvis? That might show something. My MRIs showed no piriformis issue but tendinitis in gluteus medius and hamstrings! I think you're right to handle things sequentially. It's overwhelming when information comes at you from all sides. My fingers are crossed for you. I really hope this Physio helps. Let me know.

SouthernSally profile image
SouthernSally

I had a pelvic MRI 2 weeks ago. All was fine except for the glutes tendinitis. I asked the PT if that would have showed all hip issues and she said maybe. I know that even 2 MRIs of the same area can show different results depending on resolution, boundaries, etc.

EffieT profile image
EffieT

You're right. Also depends what the physician asks to be looked at. All so complicated!!

Let me know how the Physio goes. Have a good weekend.

SouthernSally profile image
SouthernSally in reply to EffieT

I've just had two PT sessions. Two exercises she gave me hurt. Another was good. She worked on my piriformis applying pressure and massage. I see the pain doctor next week and will request a piriformis injection. I also see the neurosurgeon for a consult about the stimulator.

When I look in my online medical chart I have 9 doctors in there. For a healthy person I'm awfully screwed up!

I saw a new nurse practitioner and will probably switch to her.

How are you feeling? Are you continuing with the dry needling?

EffieT profile image
EffieT in reply to SouthernSally

Hello,

Some exercises that my Physio gave me also hurt especially the piriformis stretch while lying on my back. Apparently, it gets easier as you practice more. I stopped doing them but my pelvic PT was able to stretch my piriformis internally which helped. Actually, for me, the dry needling plus gentle exercise is the most effective.

It's ridiculous, but I, like you have seen so many doctors/specialists/physios. I'm not giving up though. Next week I am seeing a spine specialist to see whether the pain is coming from SI joint because I do have tenderness there.

Good luck with your pain specialist. Is the piriformis injection Botox or a steroid? I hope it gives you some relief. Please let me know. Also what your Neurosurgeon advises about the stimulator.

SouthernSally profile image
SouthernSally

I saw the pain doctor today. He doesn't think my pain is from piriformis since it's closer to the gluteal fold (and in the vaginal area.) He's going to do dry needling next week.I'm trying to get seen by a urogynecology practice. I need a doctor referral and she has to make a case for why I need to see them. They choose their patients as it's a specialty practice. They don't even have openings until June.

I've been looking for information on the type of doctor who treats the sacrotuberous but everything I find relates to a prolapse, or recommends PT.

SouthernSally profile image
SouthernSally

And good luck with the spine specialist!

EffieT profile image
EffieT in reply to SouthernSally

How are you doing? I had lots of dry needling yesterday. I do find it helps. Hope it does for you.

SouthernSally profile image
SouthernSally in reply to EffieT

Aside from PT have you found any doctors to diagnose or heal sacrotuberous?

EffieT profile image
EffieT in reply to SouthernSally

Not yet. I'm still searching. I hope the Spine specialist that I will see in a couple of weeks can look at my SI joint which is always tender. Maybe its connection to the Sacrotuberous ligament might provide a clue. I was examined for all the gluteal and pelvic nerves and they were all okay.

SouthernSally profile image
SouthernSally in reply to EffieT

The PT and I decided she’s not helping. I’m getting dry needling this next week. I saw the neurosurgeon on Thursday and I have lots to think about. I’ve also been watching and reading about people who solved major issues, including chronic pain, on the carnivore diet. It’s radical. I think I could manage the eating but having the right food available at all times would be challenging. I don’t know what I’m going to do. For every step a door closes. I’m so tired.

EffieT profile image
EffieT in reply to SouthernSally

I really hope the dry needling helps you. I find it releases my muscles for 2/3 weeks and then I have to have it again. It's suppose to gradually improve the muscle tension. You might get a little sore after the session but that wears off in a day or so. Remember to drink lots of water. I've had about 5 sessions to date. I have not heard of the Carnivore diet. Is that the same as Paleo? My husband has been taking CBD oil for chronic pain from Osteoarthritis. It helps him a lot. I am going to start that after I see the spine specialist.

Surgery is a big step. I presume this would would be a stim implant. Yes, lots to think about.

Don't give up! One of the doors you open will have the answers! Good luck with the needling.

SouthernSally profile image
SouthernSally in reply to EffieT

Thanks I hope so too. I'm glad the dry needling is providing you with relief.Carnivore is all meat and animal products. Paleo includes some grains and veggies. Keto is low carbs but the right kind. I'd probably try keto first if it all.

The neurosurgeon uses Medtronic. The rep happened to be on the floor and the doctor brought him in. They discussed the stim but think a more traditional one in the lumbar region is best. I have to message the doc with more questions.

I tried CBD gummies but that's like eating candy. I should try the oil. It's great it's helping your husband.

Acort89 profile image
Acort89

I’ve had really bad pelvic pain on the right side.. my mri came out clear and teh dr referred me to a physiotherapist because I was having bad pain like yourself that radiated to the flute.. the therapist even teaches you excercises to do at home and it helped out a lot.. you should look into a physiotherapist.. best of luck.. god bless..

EffieT profile image
EffieT in reply to Acort89

Thank you. I do see a physiotherapist, both Orthopedic and aPelvic PT. They help a lot but after a while, the pain returns, so I have to find the cause.

Happy that Physio is helping you. Are you taking any medication?

SouthernSally profile image
SouthernSally

How are you Effie? I'm done with the pain doctor and the new PT. I'm seeing a chiropractor next week. I saw another acupuncturist but felt worse after and can't muster up the strength for a one hour drive each way for more pain. I still have a urogyn appointment in June which I've been trying to move up. I'm on day 30 of a carnivore diet. I gave up sugar, bread, coffee, and sweeteners the week before. My gut is feeling better than it has in years but no change in the pain level yet. How about you?

EffieT profile image
EffieT in reply to SouthernSally

I've thought of you many times and wondered whether you opted for the neuro-stimulator. So, you, like me are still trying one form of therapy after another hoping something will click! I do hope the Urogyn or Chiropracter can offer you some relief. You're very disciplined to have persevered with the Carnivore diet. Great!

I had an injection in my SI joint to see whether that was a problem. It actually made everything worse for about a month. No more shots for me. I am seeing a Pelvic pain Osteopath next month....maybe she has some strategies.

My fingers are crossed for you. I hope something works soon!

SouthernSally profile image
SouthernSally

I hope the osteo helps you!

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