A bit of advice needed please

[Ray74]

Hello ladies,

I apologise if I have posted this incorrectly in the wrong place.

I am hoping for some advice regarding some ongoing issues.

Sorry it's a bit long winded.

I have been on HRT for 10 years.

I had a total vaginal hysterectomy 10 years ago (aged 32) due to persistent hormonal issues, such as severe pms.

The consultant at the time said I would have ended up having to have a hysterectomy anyway as I had 'pre cancerous cells' ? (Didn't think to question at the time)

(I previously had a few abnormal smear tests, & had laser treatment for this)

In my early 20's I also had a very painful benign ovarian cyst removed.

Anyway around 3 years ago, I felt my general health starting to decline.

Strange symptoms, very vague, coming & going.

Starting with leg pains, extreme fatigue etc.

This past 12 months, I've got worse,

Bloating, leg, groin, pelvic pains, lymph glands up & down all the time, very fatigued, headaches,

dizziness, slight nausea, hair thinning, & general limb weakness.

I also feel like my arm & leg muscles are 'wasting away'

I have lost a bit of weight, but I wasn't big to begin with, & with the tummy bloating it's quite hard to notice really.

So after lots of GP visits, & getting nowhere, & being told it's Chronic Fatigue or depression!

(Rolls eyes)

My doctor has made me feel like a hypochondriac, but I know myself, & I know something's not right.

I am not one to go to the doctors if I can help it anyway, & I've hated being treated this way.

This has been going on for 3 years! And sometimes I wonder if I'm losing my mind.

Eventually I decided to try & see someone privately,

My husband & I have insurance through work which I'm able to use.

I needed to get some answers, & be taken seriously, so off I went.

Well firstly my consultant ( a specialist in chronic pain management) arranged a lumber spine MRI to see if there was a problem with my back that was causing the coccyx & leg pains, = results were, not really, just the usual age related slight disc bulges.

But the MRI did pick up 2 cyst type things on both sides of my pelvis.

Then I had an Ultra sound, = I was not told anything much after, other than I they didn't know what it was, & I needed to have a CT scan.

So I had the CT scan, & still I'm told nothing!

That didn't make much sense to me-

Surely they know by now?

A MRI, an Ultra Sound scan, & a CT scan & I'm still not told what it is?

Then my consultant finally rang me last week to say she was referring me on to a Gynaecologist as the cyst type things are not near my posterior bladder as was first thought, but near to where my ovaries once were.

Bearing in mind I have no ovaries, uterus, Fallopian tubes etc.

So I'm still none the wiser, other than I have an appointment with the gynaecologist next Thursday.

I did however receive a copy of the letter this morning that has gone to my GP-

And this is what it says-

I have-

A 5cm right Adnexal cyst &

a 4.5cm left Adnexal cyst-

the left one being 'complex &

multi-septated

I am obviously concerned, as nobody is really telling me anything, but saying that, they're not exactly rushing me in to see the gynaecologist asap either.

Because of my age 42, and my history, should I be worried?

Everything I've read on the internet regarding this cyst description seems to be quite worrying.

I have read that their is a slight chance of still getting ovarian cancer even after the ovaries are removed.

Apparently some cells may be left behind at time of surgery, & can then go on to become cancerous & migrate elsewhere after a time.

I think it is still called ovarian cancer, or maybe it's called PPC (primary peritoneal cancer?)

Either way, with my history of abnormal smear tests, & the fact I've been on HRT for a long time, it makes me worried.

From the research I have done so far, OC symptoms can include leg & groin pain in some instances.

I also forgot to mention that I've had left rib pain/discomfort on & off for a couple of years now also.

I'm sorry this is so long, but it's easier to understand if I write my previous medical history down.

Thank you for taking the time to read, & I hope someone can possibly shed some light on this for me.

God bless you all x

[Choski]

I am not going to even attempt to diagnose you ! it is good that your tests have finally been taken seriously and what a torrid time of it you've had. Your cysts will have to be further investigated and it may be that you will need either a biopsy or further surgery to remove both before the Pathology report reports a diagnosis which may be benign or not.

Cysts can be clear or complex, they can be septated (walls basically) or not septated. There will be other indicators that would have to be present even in a multi septated complex cyst and even then there may be no cancer cells. It would not be right to say any more than you will have to be a bit more patient but you definitely did the right thing. Have you had a CA125 blood test? If you have or plan to have one please also bear in mind that whilst the normal range is under 35 reading result that approx 5% of women do not have elevated levels and DO have cancer whilst a similar number of women have high readings but DO NOT have cancer. That result can't be therefore a stand alone indicator but is put alongside all the other indicators.

I think you will be asked to have this blood test and if your GP can get that done tomorrow then your results will be ready for your Gynae appt next week. As it can take a couple of days sometimes for the labs to run the results.

Keep us updated

Take care and deep breaths for a little longer. You are on the right path now it's a shame you've been mucked around

Clare xx

[Ray74 in reply to Choski]

Thank you so much for taking the time to read & reply to my concerns.

Of course I totally understand that you can't possibly diagnose me, but I really do appreciate the information you have given me.

I haven't had a CA125 test as yet.

I can request one through my doctor, but it's unlikely I'll get an appointment until next week, then I'd have to wait for the result after that, by then I will have seen the gynaecologist.

So I'm not sure what to do, shall I just see if the gynaecologist does one?

At least now I am being taken seriously, & things are being investigated properly.

I remember pleading with my GP, & then getting emotional (which didn't help my argument!)

He said the NHS won't give me a MRI for the symptoms I was having.

He eventually offered to refer me to 'The Pain Clinic'

Where I was told that I would have to probably 'live with chronic pain of which there is probably no cure'

I told my GP that my quality of life had diminished so much these past 12 months, I felt like a little old lady, I'm only 42, I shouldn't be feeling like this.

Some days I can hardly muster the energy to shower.

My arms ache washing my hair!

Because my symptoms have been so odd, & come & go all the time, with varying intensity, I did start to wonder if I WAS imagining them all!

It's been a very long & frustrating journey, but at least something is finally happening.

Thank you again for your sound advice, & I'll be sure to update you when I know what's going on.

R x

[Nesie237 in reply to Ray74]

You had a vag hysterectomy and said you had no ovaries or Tubes. I didn't see where they were removed, however. With a hysterectomy, only a Total Abdominal Hysterectomy with Bilateral Salpingo-opherectomy would have removed your vagina, tubes, and ovaries. That's the total meaning of that mess.

I think you are in the right place but pray I am wrong. Can you be fast tracked with your Gyn to an (I hear your gasp) oncologist? All those symptoms are very suspicious.

I'm really not trying to tell you what to do, but I do desperately want to help. As the other ladies said, keep us in the loop.

P.S. I tend to be a fat head know it all ex RN who is an almost 4 year ovarian cancer survivor. Take it in your hands and act! 🤗 Hugs, Nesie 237

[Nesie237 in reply to Nesie237]

Me again. A GYN, even a GP, can order a CA 125. Nesie 237

[Ray74 in reply to Nesie237]

I'm a bit confused myself!

They don't remove everything vaginally?

I think I'd better double check my medical records with my doctor, as all this time I was under the impression that everything was removed (I'm sure this is still the case) but it was done vaginally, that I do remember unfortunately (lol)

And I've been on HRT for 10 years so I hope they got it right!

*I've just left a message for my doctor to call me, so I can ask him to double check my records to find out exactly what surgery I DID have 10 years ago! (Worried now!)

Thanks for the info

R x

[Caroles1]

Choski said it all,

I can only re iterate all of that and offer my support and please let us know how you get on xxx

[ssjmichael]

It sounds like you've been through a lot. I think it would be beneficial if you could seek out a gynecological oncologist. It doesn't necessarily mean you have cancer at all, but a specialist in the field will be able to run the proper tests, and do any surgeries if necessary (even for benign cysts).

Like Clare says, none of us can truly diagnose you. There could be a multitude of things that would be causing the symptoms you've had over the last few years, from your basic vitamin deficiencies, to a thyroid issue (which increases with age), to just the fact that you had a hysterectomy and essentially had menopause as a result of that, and the changes that go along with that.

I think you're doing just about all you can do on your end. Next up is to see what the gynecologist says, and take it from there. If they aren't helpful enough, then request a gyn. oncologist if you can. Sometimes you have to keep pushing them until you get answers.

[Ray74]

Thank you Caroles1 & ssjmichael, I appreciate you taking the time to post a reply to me as well.

I know I have to be patient, it's been 3 years, so another couple of weeks isn't going to be that difficult is it!

Thanks again, I'll update when I know more

R x

[Nesie237 in reply to Ray74]

Me again. I'm so pesky. Don't be tooooooo patient. You've been patient quite long enough. Chalking up your symptoms to Chronic Fatigue, and making you feel that your symptoms aren't real- makes me want to pop someone in the nose. Let them (men??) get those answers and deal with them. Grrrrrr!

[Hidden]

I would go to gp ask for a ca 125 blood test, so results will be back when you see consultant next week ask to see a gynae oncologist as he or she would have the knowledge to diagnose you accurately. Your gp should refer you and ask to be fast tracked, you are waiting around long enough. I am not saying it is Cancer but its best sorted and your mind put at rest especially when you have private health insurance.

[Choski in reply to Hidden]

Yes I agree, good advice.

[Ray74]

Thank you Suzuki

I will phone my GP in the morning & see if they can squeeze me in for a CA125 blood test.

If not I'll have to wait until my gynaecologist appointment next Thursday & see if he offers me one.

[GBIRVMIC]

Hi Rachel oh my goodness I am flabbergasted reading your dilemma and being pushed between pillar and post.. you have my total sympathy. I cannot believe it's 3 years going through all this angst and at last you are being listened too. The advice you've been given is wonderful and I can't add anymore but offer you my support and please shout loud and clear that enough is enough. Take care and will look out for your next update. I wish you all the very best. Love Michelle xx💐

[Ray74 in reply to GBIRVMIC]

Thank you for your reply GBIRVMIC (Michelle)

I really appreciate your lovely comments

R x

[BJ_UK]

I expect that your doctors are not telling you much yet because they don't actually know much yet, despite all your tests. Medicine is like that sometimes!

It sounds as though they have arranged for you to see a gynecologist fairly quickly after your adnexal masses were found, and I'm sure that the gynecologist will arrange for you to have a CA125 test if you haven't already had one by then. You may find that your GP is able to squeeze you in or arrange for you to have a CA125 test either at the surgery or at a local hospital, so that the result is available for Thursday. (Your GP doesn't have to actually see you to request this, though you may want to request a phone consultation if you can't see your GP face to face.)

I have a friend who had ovarian cancer who had problems with muscle weakness which led to her diagnosis. She was told she had dermatomyositis, which is sometimes linked with ovarian cancer, though by no means always. She had it for at least two years before she was diagnosed, and yet her cancer was still only stage 1C. That was six and a half years ago and she is in very good health, with no recurrence of either the cancer or the dermatomyositis since her original treatment. I can't say that's what you've got, but I would take her experience as encouraging if it turns out you do!

All the best for Thursday and afterwards,

Barbara

[Ray74 in reply to BJ_UK]

Thanks BJ_UK (Barbara)

I did try & get an appointment, but my surgery is ridiculously busy, & I can't even see the nurse let alone the doctor until next Friday!

So I'm just going to wait & request a blood test from the gynaecologist next Thursday.

Glad to hear your friend is in good health now

I just felt sure after all the scans they would at least be able to tell me something, oh well I've waited this long, a bit longer won't matter too much I guess.

Thanks for taking the time to read & reply to my concerns.

I do appreciate everyone's feedback

R x

[Cropcrop]

Hi, my goodness, you have been on a rollercoaster haven't you? Claire has nailed this so nothing to add other than that maybe your practice nurse could do the CA125 test if you are unable to see your GP then your gynaecologist has all the info to give an informed consult. Good luck with all of this and glad you're (hopefully) getting to see the right people. Let us know how it goes ❤️Xx🎄 Jane

[Ray74 in reply to Cropcrop]

Thank you Cropcrop (Jane)

For your kind response also

R x

[Nesie237]

No, I didn't delete it, but stupidly, I also didn't explain what I meant. It used to be believed, at least in the U.S., that HRT, often a combination of estrogen and progestin, not only helped with early menopause but helped with symptoms of menopause. That was probably true for a time in many women's lives.

It is now known that the opposite is true in regard to heart disease in women. HRT increases heart disease in women by an unfortunate margin.

I hope I didn't muck that up and I hope I haven't put you into a mode where you are extremely frightened. I just want you to stand up for yourself and get the healthcare you deserve.

If you Google HRT, you'll see more information. My best, Nesie

If you don't want my input, just say so, and I'll keep my 🤐 shut.

[Sunfleury-UK in reply to Nesie237]

With respect Nettie, studies on the use, benefits and possible implications of HRT are more complex than you have characterised. Sx

[Nesie237 in reply to Sunfleury-UK]

You are right, I overstepped and didn't take other factors into light. In my overzealousness to help, I went overboard. I appreciate your input.

In future I will keep my under informed opinions to myself. It's probably better not to share personal experiences. Just because it happened to me doesn't mean it will happen to others. By the way, my name is Nesie, short for Denese. It'S not Nettie

Over and out

[Nesie237]

I have been scolded for my partially informed opinions now. If you want me, I'm here. I just think you need a lot of encouragement to get help. I'm sorry to you if I offended you or hurt you. It was certainly not my intention.Nesie

[Ray74 in reply to Nesie237]

Thank you Nesie237 (Denese)

For your comments,

You haven't offended me at all.

I appreciate you taking the time to respond to my concerns also.

I don't really know that much about HRT, other than 10 years ago my consultant told me that I would be on it for a good 20-25 years as I was so young when I started on it. (32)

All I know is that it stopped me having the surgically induced early menopause, the hot flushes, osteoporosis & what not.

I have no idea if it's safe or not for me to be on it that length of time.

Anyway, thank you again for your input, I'll be sure to post again as soon as I know what's happening

R x

[Nesie237 in reply to Ray74]

Maybe just making you aware that there are concerns now regarding HRT and heart disease will help. There are certainly other factors involved, I'm sure. My best wishes, Nesie 237

[jmackmom in reply to Nesie237]

Knowledge is power Nesie. Thank you for every bit of your input. Thanks to you I'm going to investigate HRT more fully

Susy

[Nesie237 in reply to jmackmom]

It'S always best to have all the information you can get in any situation.

[Nesie237 in reply to jmackmom]

My thought exactly. I investigate everything that comes my way. As I age, 60, and having had quite a number of serious illnesses, I find that is 100% true. A professor told us many years ago to question everything. Now I'm a critical thinker.

[Sunfleury-UK in reply to Nesie237]

I'm sorry if you felt scolded... that wasn't my intention at all. There is a huge amount of discussion, studies and opinion about the possible risk-benefits of HRT for individual women and likely much more to come.... Best wishes Sx

[Nesie237 in reply to Sunfleury-UK]

And I'm sorry I over reacted. I was trying to help Rachel. I don't like to see people told what she has been told regarding all the other matters.

The HRT was out of my knowledge sphere.

Best wishes with my apology, Nesie 237

[Ray74]

I've just checked my HRT & i'm prescribed

Elleste Solo 2mg tablets, ( I was also prescribed Estradot 50 micro gram patches which I used as well as the tablets for many years,

I stopped using the patches about a year or so ago as I found they made my boobs swollen & painful.

Maybe I was taking in too much?

But in my ignorance I stopped using those, so now just take the tablets alone.

I have never been monitored ever regarding my HRT, I have asked on several occasions whether I'm still ok to be on it & did I need my hormone levels checking?

I was told I didn't need my levels checking & I was fine to stay on it indefinitely.

Anyway, the fact that I'm on Estrogen alone tells me that 'yes I must have had my ovaries removed at the time of surgery, or I wouldn't be on estrogen alone would I?

Can anyone shed any light on whether I could have had a total hysterectomy done vaginally?

I just assumed they'd they'd taken everything including the Fallopian tubes also, is that not necessarily the case?

I'm really confused now!

I've requested a call back from my doctor so hopefully he'll tell me.

[Nesie237 in reply to Ray74]

My two cents again. Apparently under certain conditions (?) you can have your tubes and ovaries removed with a vaginal hysterectomy. When I read your story, I just didn't see where your tubes and ovaries were removed. Apparently they were or you wouldn't be on HRT. Nesie 237

[Ray74]

I'm getting myself in a bit of a state now with my appointment looming on Thursday.

Last night in bed I couldn't sleep, I was having strange buzzing/vibrations at the backs of my knees! And try as I might I couldn't get comfortable.

This morning I've had stabbing pains in my groin, shortness of breath, headache, & im soooo tired & fatigued.

Everything I've read, indicates that most of my relatively new-ish symptoms are advanced symptoms.

Sorry to sound so dramatic, But i can't talk to my husband at the minute, as he's adamant I'm fine!

I know I need to stay calm, but what if I still don't have any answers on Thursday?

R x

[Sunfleury-UK]

I think that the anxiety of the Unknown is incredibly powerful and difficult to manage- I found that even when the news was difficult, as it was specific, it was easier to deal with...

You've had an awful time and have had to really push and advocate to be heard. It sounds like you are a really strong, insightful and courageous person. It may be that on Thursday they don't have all the answers but certainly you should be in a better situation in terms of diagnosis and appropriate treatment... I found that IF (and it is a big if) there is something really serious then the NHS moves really efficiently and quickly... I am of course hoping that your worst fears are not realised- they may well not be!

Some people will always say 'don't worry', 'you're fine'- that's more about them wanting you to be ok and sometimes even more about themselves... What worked for me (& we're all different) was focussing on what questions I needed to ask depending on what the possible answers might be at each appointment and then I wrote them down in a notebook. It's good to be prepared and can also help you get what you need from any appointment. Both Ovacome and Target Ovarian Cancer (I think) have a list of possible questions to ask consultants- they might be a good place to start and throw up some ideas....

Distractions can also sometimes work (to a point!!) but mostly, be kind to yourself... Shall be thinking of you on Thursday, & wish you hope and strength, Sxx

[Ray74]

Thank you so much sunfleury

Your advice is very very much appreciated, & extremely sensible!

What a good idea to write down some questions before I go, My mind does tend to go blank sometimes when trying to remember things.

I'll definitely do that, thank you.

And you're so right about the unknown being far more terrifying than actually knowing the facts,

Whatever the outcome turns out to be, I know I'll be so much better when I know what's going on.

I am a strong person, but there's been many times in the last couple of years where I've just wanted to give up.

I'm a stubborn woman (taurean!) & I'm determined to get to the bottom of this, whatever 'this' turns out to be.

My husband is a usually really good, but this thing has been going on so long, that sometimes I think he thinks some of it is physiological.

(Which I'm not denying some of it maybe) - but only to a point.

I've had a crappy couple of years, what with my health, & my mother being diagnosed with early onset dementia at 58.

She's now in quite advanced stages, as early onset can be very aggressive.

So I'll admit, it's been hard, but I am a tough old bird, & I'm hanging in there!

Thanks again S, for your help & advice

R x

[Ray74]

Morning ladies

Just a quick update,

I saw the gynaecologist on Thursday, & unfortunately he hadn't been given all the info from my previous consultant,

So I had to bring him up to speed.

To cut a long story short, he was going to try & hunt down my histology from 10 years ago when I had my hysterectomy

To see exactly what I had removed.

He telephoned me last night to say he'd found the histology & it looks like my tubes were possibly not removed!

I thought they had been but that's what he's thinking. (90%)

So after another radiologist looked at my scans, they think I may have dilated Fallopian tubes, (90%) sure.

Which can happen after a hysterectomy apparently

Why my tubes were not removed I really don't know?

He will do a laparoscopy first, to see if he can remove them then, if not he will make an incision & remove them that way.

Hopefully 3rd week of January & then they will be tested.

It sounds very simple,

Let's hope that's all it turns out to be.

Like I said he's 90% sure that's what it is.

I did have a CA125 test as well, which came back normal.

So all that's potentially good news.

I will update this post after the laparoscopy/op so that in the future any ladies that come across this post with the same problems won't have to wonder what the outcome was, obviously when I know 100% what the results are.

Thank you for all the advice & well wishes I received

& I wish you all a happy & healthy Christmas

God bless

R x

[Hidden]

That all sounds pretty good news. Practice changes so quickly in medicine, ten years can be quite a long time. Hope you do get to have it done laparascopically as I found that really a piece of cake. What a relief. Now get on on have a some great festive relaxation. x