Pelvic transvaginal ultrasound - what's it like?

[Milo]

I am yet to figure out how this links with the ME/CFS.

Please consider that it may not relate at all to ME and that one person can have multiple concurrent issues that happen at once, overlap, but may not link at all to ME.

Here are a few conditions that are not related to ME but may occur concurrently: cancer, osteoarthritis, osteoporosis (which can be due to inactivity and lack of weight bearing activity, granted), frequent bladder infections, kidney stones, rheumatoid arthritis, lupus, Parkinson's, depression, diabetes, heart disease, pancreatitis, Crohns ... just to name a few.

I would agree that the concurrent diseases can interplay in feeling extra miserable. However I would not say that ME causes everything downstream.

 

[Haveyoutriedyoga]

Please consider that it may not relate at all to ME and that one person can have multiple concurrent issues that happen at once, overlap, but may not link at all to ME.

Here are a few conditions that are not related to ME but may occur concurrently: cancer, osteoarthritis, osteoporosis (which can be due to inactivity and lack of weight bearing activity, granted), frequent bladder infections, kidney stones, rheumatoid arthritis, lupus, Parkinson's, depression, diabetes, heart disease, pancreatitis, Crohns ... just to name a few.

I would agree that the concurrent diseases can interplay in feeling extra miserable. However I would not say that ME causes everything downstream.

Absolutely, although I always wonder about things that made me vulnerable to ME and things that have mechanisms that make the ME worse (or better!).
For example, I've heard high intensity exercise can make PCOS much worse, which was what I was doing when migraines and fatigue got much worse and the suite of ME symptoms followed. PCOS is also linked to insulin resistance which I was suspicious of already and I find affects my energy, and autonomic disturbances.

 

[SunnyK]

I had a pelvic transvaginal ultrasound some years ago, and I found it much less uncomfortable than a regular cervical exam. They did have me use the wand myself once it was inserted. It was all a little weird, but not painful.

I had one about 19-20 years ago, and it wasn't painful (like perchance dreamer, I found it less uncomfortable physically than a cervical exam, because my cervix is apparently not easy to see). However, if you have a Hx of childhood sexual trauma, it can be pretty triggering, as I discovered.

 

[JemPD]

I have had PCOS for 29yrs @Haveyoutriedyoga, i only got proper treatment after pushing for gyn referral in 2002. I was treated with metformin for insulin resistance which sorted out all the other PCOS symptoms. It was almost miraculous i lost weight had regular periods with normal amount of pain etc etc.

I think there is evidence to suggest that gynae problems are more common in PwME, particularly PCOS if i remember right. I think that is in the MEA's Purple book, so reasonably reliable, in fact IIRC there is a whole 'grey box' section on it in the research section.

 

[Haveyoutriedyoga]

I have had PCOS for 29yrs @Haveyoutriedyoga, i only got proper treatment after pushing for gyn referral in 2002. I was treated with metformin for insulin resistance which sorted out all the other PCOS symptoms. It was almost miraculous i lost weight had regular periods with normal amount of pain etc etc.

I think there is evidence to suggest that gynae problems are more common in PwME, particularly PCOS if i remember right. I think that is in the MEA's Purple book, so reasonably reliable, in fact IIRC there is a whole 'grey box' section on it in the research section.

Interesting, thanks for sharing that. How do you differentiate between PCOS symptoms and MECFS?

 

[JemPD]

Well i had PCOS for 6-7yrs before the ME showed up, i never noticed any significant symptoms that were similar to ME before i got ME... all my PCOS symptoms were hormone related - excess hair, acne, difficulty losing weight, periods were rare but when they came they were agony & made me ill. Lack of monitoring initially mean a cyst was allow to grow big & i ended up losing the ovary.

I mean i was 'tired all the time' since i was about 18 but i think I had PCOS from the beginning of puberty i was put on the pill at age 12 because of menstrual related symptoms. And the TATT that developed as a young woman is explainable - very demanding job, poor diet, lots of stress, not enough sleep. And ME makes me feel ill, like the flu, so not 'tired'. So while i guess i may have felt "fatigue" & sometimes a bit dizzy I never noticed any overlap in symptoms. Because for me ME is not "fatigue", i dont feel tired i feel ill. I never felt ill when i only had PCOS.

What makes you think that the symptoms are difficult to discern between?

 

[Haveyoutriedyoga]

Well i had PCOS for 6-7yrs before the ME showed up, i never noticed any significant symptoms that were similar to ME before i got ME... all my PCOS symptoms were hormone related - excess hair, acne, difficulty losing weight, periods were rare but when they came they were agony & made me ill. Lack of monitoring initially mean a cyst was allow to grow big & i ended up losing the ovary.

I mean i was 'tired all the time' since i was about 18 but i think I had PCOS from the beginning of puberty i was put on the pill at age 12 because of menstrual related symptoms. And the TATT that developed as a young woman is explainable - very demanding job, poor diet, lots of stress, not enough sleep. And ME makes me feel ill, like the flu, so not 'tired'. So while i guess i may have felt "fatigue" & sometimes a bit dizzy I never noticed any overlap in symptoms. Because for me ME is not "fatigue", i dont feel tired i feel ill. I never felt ill when i only had PCOS.

What makes you think that the symptoms are difficult to discern between?

That is really useful, thanks. I asked because I have a mish mash of issues and some have come to light only after being diagnosed with ME, some of it seems to be blood sugar related and I'm trying to unpick the fatigue from that, from other conditions and ME, in addition to the 'ill' feeling. In some ways I feel I have come to understand the seperate sensations and symptoms themselves really well but am even more confused about what is causing what, and I struggle to get to speak to my GP so have to be strategic in prioritising what I ask for help with and push more on.

 

[JemPD]

That is really useful, thanks. I asked because I have a mish mash of issues and some have come to light only after being diagnosed with ME, some of it seems to be blood sugar related and I'm trying to unpick the fatigue from that, from other conditions and ME, in addition to the 'ill' feeling. In some ways I feel I have come to understand the seperate sensations and symptoms themselves really well but am even more confused about what is causing what, and I struggle to get to speak to my GP so have to be strategic in prioritising what I ask for help with and push more on.

sometimes it can be sooooo confusing when you have a lot of different things! Good luck with it all.
Just as an aside i do have yearly TV ultrasounds ever since i was properly dx by the gyn, to monitor cyst size. make sure you dont let gp just fob you off with 'it'll be fine now youre on the pill'.

 

[lunarainbows]

I’m not sure where to put this, but as people have been discussing their experiences with the TV scan, MRI, endometriosis etc here, I thought I’d write mine down too.

I’ve had period problems for a very long time - never got a diagnosis of what is actually wrong because I never could tolerate the transvaginal scan. The advice I was given was -do more exercise! Or just given the pill without any idea as to what was wrong. And the NHS refused to give me an MRI when I asked.

I went private recently as I was wondering if endometriosis could be behind some of the bowel issues, and so I had an ultrasound over the abdomen which was totally normal. Then I had an MRI, and that is what showed I have both adenomyosis and endometriosis. this explains my severe period problems and pain in the area. My uterus is quite a lot larger than it should be because of the adenomyosis. I also now have a treatment plan - including trying different endometriosis diets and trying the mini pill again. If that doesn’t work, then there is the Mirena coil and surgery, but I don’t want to do these because of the risks at the moment, and I know doctors would be very reluctant to do it as well. It’s a relief to know what’s wrong, at least with my periods - after a very long time of suffering!

(The doctor also said even the MRI doesn’t always show endometriosis - if you have lots of small specks of endometriosis all throughout - it doesn’t show up, and the only way to truly know the extent of it is if you have it or not is by doing a keyhole surgery. Luckily mine showed up on the MRI, but she said there could be more there. Even if there is - we won’t be doing anything about it at the moment).

 

[livinglighter]

I’m not sure where to put this, but as people have been discussing their experiences with the TV scan, MRI, endometriosis etc here, I thought I’d write mine down too.

I’ve had period problems for a very long time - never got a diagnosis of what is actually wrong because I never could tolerate the transvaginal scan. The advice I was given was -do more exercise! Or just given the pill without any idea as to what was wrong. And the NHS refused to give me an MRI when I asked.

I went private recently as I was wondering if endometriosis could be behind some of the bowel issues, and so I had an ultrasound over the abdomen which was totally normal. Then I had an MRI, and that is what showed I have both adenomyosis and endometriosis. this explains my severe period problems and pain in the area. My uterus is quite a lot larger than it should be because of the adenomyosis. I also now have a treatment plan - including trying different endometriosis diets and trying the mini pill again. If that doesn’t work, then there is the Mirena coil and surgery, but I don’t want to do these because of the risks at the moment, and I know doctors would be very reluctant to do it as well. It’s a relief to know what’s wrong, at least with my periods - after a very long time of suffering!

(The doctor also said even the MRI doesn’t always show endometriosis - if you have lots of small specks of endometriosis all throughout - it doesn’t show up, and the only way to truly know the extent of it is if you have it or not is by doing a keyhole surgery. Luckily mine showed up on the MRI, but she said there could be more there. Even if there is - we won’t be doing anything about it at the moment).

I’m glad you got to the bottom of what has caused your period problems for so many years @lunarainbows

Having to go private is costly and is an expense that pwME should not have to foot, but I also see it as an important strategy into proving something is physically wrong. The more problems reported to the GP that can be proved, the less likely they can credibly continue to disregard symptoms as malingering and emotionally stress related or natural changes with ageing, etc.

 

[Leila]

I'm glad you finally found the root of your problem, Luna, even though so late as so many women with endometriosis.

Not sure if I have already posted this, but think it's important for diagnosing, so I'll just write it down here. It's mostly from my memory of what doctors have told me and my own experience.

********I'll go into detail so whoever doesn't want to know please stop reading here.*********

There is a severe form of deep infiltrating endo called "rectovaginal endometriosis". It affects a minority but still significant number of patients and can cause a lot of pain* (during intercourse, defecating, constipation and even ileus).

It grows in the rectum, Douglas space (between vagina and rectum) as well as the posterior fornix (=the very end) of the vagina. If you google it you'll find pictures.

It can be completely hidden even in MRIs and transvaginal ultrasounds. BUT there is a very simple method to diagnose it: Palpation and just looking (!)

Palpation (inside vagina + rectum; separately and/or simultaneously):
The obgyn feels "hardened", stiff tissue, sometimes less "shiftable" as it should be.

Looking for endo inside the vagina:
There are two tricky things here. Firstly, the speculum being used itself might push the endometriosis away so the obgyn simply doesn't see it. Secondly, the obgyn needs to "lift" the cervix a little to see into the posterior fornix of the vagina (the very end of it). This part is "hidden" underneath the cervix and not visible if not specifically looked for. If you have rectovaginal endometriosis, there is a red/blueish structure shining through (google for pictures) or in severe cases even growing into the vagina.

If you have this kind of endo, you can actually diagnose it without surgery.

It's very simple, non invasive & cheap to do. The obgyn just needs to know.

So if you suspect endo please make sure the obgyn doesn't only rely on machines but uses his own senses as well.

Mine was not diagnosed for years, my later endo specialist called it a "shame", since it would have been so easy.

*There are different theories on what endo actually is and how it develops. Rectovaginal endo seems to be different in it's structure, not sure why.

 

[Leila]

One more thing:

Especially if you have deep infiltrating endometriosis have your kidneys checked as well via ultrasound.

Endo can grow on the ureter obstructing it. This can lead to kidney failure. It is often is completely free of symptoms until too late.

Again, very preventable and easy to check for. The obgyn just has to do it.

 

[Leila]

@lunarainbows

Here in Germany we sometimes get told by endo specialists to take the pill as a vaginal suppository. It's supposed to cause less side effects by bypassing the GI tract. But of course please check with your doctor.