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(20 Posts)
jemimavintage Wed 11-Nov-15 17:22:18

Re-cap on story so far.. (I'm 48)

Painful periods since C-section birth of daughter 20 years ago. Last 18 months the period have been debilitating....lasting 8 days....intense pain for 4 days even after bleeding has stopped. Painkillers not touching the pain at all. I have a busy busy job and this has all impacted on life so much..

Initial GP gave me naprox, then mefenamic acid. Both did nothing. Her comment was: they work so well for me, perhaps you're anticipating the pain and 'making' it happen? Me: gobsmacked!! Looking back, I should have done my nut really.... I did have a transvaginal ultrasound. Nothing found. Blood test: on the cusp of menopause (although, I now know that levels can be different on any given day, so one test is pretty much NOT going to give you that information)...

Moved GPs for re-location: notes not at new GP, male dr interrupts everything I say to tell me he has no notes, therefore....what can he do. I find that attitude poor.... He has the patient sat infront of him - he can listen and make a judgment upon what I say, perhaps...

After undertaking my own research online, I feel it's endometriosis.. I can tick all of the boxes for it.

GP gave me Cerelle 30 days ago. I have NEVER experienced such intense pain as I have been in for most of the time I've taken it and for the weeks after I stopped. Because of my job, and a sh*tload of travel that I have to do, I asked for something that would just lessen the pain a little. What Cerelle did was had me constantly bleeding, constant cramps (day and night) with NO let up, painkillers did nothing. But not only cramps, higher area pain, soul destroying lethargy also.. No longer would my periods be predictable. I had to stop taking them.....thinking that I would fairly quickly get back on track. No. The pain remained and remains (!!)....bleeding did stop though. No sign of any period. Can't predict when that can come and have a LOT of life-stuff to do that I need to work around....period, pain-wise. So taking that Cerelle has ended up with me in a complete and utter mess really..

At this point, I'm not into any idea of trying this and trying that. I don't have that luxury, schedule wise...and I have to say, nerves wise. I'm at the end of my tether now. I also don't want to liaise with GPs more than I absolutely have to. Over my lifetime I've found them to be mostly: lacking in knowledge, impatient, unsympathetic and...arrogant. <----This could be because my expectations of them have been high (perhaps), and that's not necessarily been fair, on my part.

So trying is out. No more trying hormones to control the pain. I also do not want any general anaesthetics for 'diagnosis' purpose. Again, schedule and nerves are too fraught for it.

During all of this I've had to travel out to USA and am here til April. I saw a gynae here yesterday. He got exactly what I was saying, so bloody refreshing. And I'm not saying a UK gynae wouldn't have been the same - but I feel that I would have been trundled down the 'trying' route...and this issue would have gone on, and on, and on...and the pain, sickness.....weight loss (I'm now 107lbs through all of this!!! 5 foot 5!!)....

The upshot of seeing the gynae was that he can do a hysterectomy. He's given me some proper painkillers in the mean time. He didn't bat a bloody eyelid at that - he KNEW the pain, from his experience of other women dealing with this. No hinting that it was in my head, no nothing.

I'm looking into gathering the funds for the hyster. I've got a million other things to spend that kind of money on but.....something has to give. Travel insurance...I don't think that's a goer, but....maybe.. dunno... To me, this is an emergency. If I continue to lose weight, I'll be see-through!!

In some ways, it kinda doesn't matter what the diagnosis is.....if everything's coming out. Obviously if there was something sinister, he's gonna see that and let me know. And I know the hyster isn't necessarily without its own major issues....

So yeah, it all sucks really...but something's got to 'happen' in an effort for the situation to be improved.

All you ladies suffering with this sort of thing - the pain, the 'toughing it out', life going on around you, making demands on you when you feel like crap.....or people who are in constant pain (!!!!! something I have never experienced before the Cerelle debacle)......I completely take my hat off to you..


PollyPerky Wed 11-Nov-15 19:01:11

It all sounds horrendous especially having to relocate to the US for the next 6 months.
But......are you sure this dr is not just scalpel happy? If you do have endo then a hysterectomy won't solve it all if you have tissue elsewhere (and not just the womb.) If you had a TVS then it ought to have picked up some endo (perhaps.) Has he actually given you a diagnosis or is he thinking 'whip it all out and end of story.'

jemimavintage Wed 11-Nov-15 20:14:15

He's said he will do something with any endo he sees in there (not his actual words, but along those lines). I just cannot see any other way out of this. The TVS person only seemed to look at the ovaries and report back on the ovaries. My dr didn't even float the idea of endo.....just started veering to the 'it's all in your head' routine... Ugh!! hate that...

The pain I have (assuming it's endo) is only present for 8 days of the month - during and after bleeding. So my hope is that it's oestrogen-irritated.. I think I've read that oestrogen can be released from places other than the ovaries - but at very low levels (not sure how accurate that is). My thinking now is: no ovaries, far less oestrogen (which yes, brings its own set of issues, but....)...

I'm as confident as I can be that the gynae here is.....legit.... Yer do never know tho. There are some horrendous news stories of bogus/well underqualified GP's/surgeons...over in the USA and UK.... It is a proper gamble. I just know that I cannot cannot try any other thing.....after this hideous experience with the Cerelle. The pain that that drug has given me has been off the scale. It's basically stolen the best part of a whole month of my life. So the thought of a slapped arse faced GP......putting me on some UK gynae wait be told to try this try that......for x amount of time... months...years.... I know I can't tolerate that - emotionally or physically. I would rather take my chances with a hysterectomy...

Being female eh.....great sometimes int it!!! (not..)


PollyPerky Wed 11-Nov-15 21:09:43

Period pain is caused by the release of prostaglandins once bleeding starts.

Nothing to do with oestrogen - more to do with the breakdown of the lining which can be anywhere in the body with endo. Though if you remove your ovaries you won't have a cycle. But then you will be plunged straight into surgical menopause which will be hell. You will then have the option of HRT oestrogen-only, which will not cause a bleed so you may be okay.

You could have a laparotomy to look for endo before you take such a drastic step.

I don't know why you have been put on the progesterone only pill as this may well make things worse .

Can you not get back to the UK to see a good harley st gynae and have another opinion?

jemimavintage Wed 11-Nov-15 21:31:36

No way am I having a general just to look for endo. If I have a general, it's to take everything away because a general is defo me at my very last resort. Cannot cannot do the looking and trying x how many times, over what period of long are the waits in-between.... No way. My physical health and nerves won't tolerate it. It's a gamble I'm prepared to take with the surgical menopause hell.

Re the oestrogen - causing the bleeding I mean, within the cycle. So the endo bleeds respond to the cycle in general.

But I do get what you're saying.....and I believe you are correct. A cautious approach is defo a better way forward (and anyone reading this who isn't me..... I don't recommend what I'm doing as being a better option in any shape or form)...and I'm convinced it is the case that there would be a med/procedure other than hysterectomy that would ease my pain. But it's the getting there. I can't do it. My nerves are shredded and I just about have enough left in me to do ONE general and hope to goodness that there are no complications from that one surgery... The HRT question afterwards, and menopause symptoms....for now it's secondary but yeah, I know that too could be a tough ride. Seems like a less tough call (for me personally) than eating painkillers day and night until periods stop, mainly ambivalent drs, waiting lists, risks of several generals, risks from ablation/grow backs, hormone type meds + periods.....trying to get that balance between risk/benefit...

The other complicating factor is that I'm in the USA for 6 months every single year.... and have been back and forth for the past 12 years... so, no sooner am I on some list for a procedure, than I'm back here again.....minus proper meds for the pain, minus appointments, and so on...

Cerelle, yeah odd. Such a god awful experience that's now currently got me on oxycodone to deal with the current pain (nearly 2 weeks after stopping it!!!). The gynae here said he does NOT recommend desogestrel to anyone with endo or suspected endo...


PollyPerky Wed 11-Nov-15 21:47:30

I think you ought to try to rationalise your aversion to a GA. A light GA for an investigation is a day case- do you have a phobia about a GA?

Why put yourself through a major operation when you may not even benefit from it?

In the UK a private hysterectomy costs between £6-8K.
If you can afford this in the US then you can afford a flight and a private consultation (£200 ish) and could see someone next week practically for another opinion. If you needed an op (privately) it would be done possibly within days. There wouldn't be any of this waiting you seem to imagine.

Not sure if you are in the US for work or accompanying a partner, but surely you can have time off for an op and have that in the UK?

SpaceCucumber Wed 11-Nov-15 23:10:20

I had very similar issues. Turned out I had adenomyosis. I had my hysterectomy (which other than menopause, is the only cure for adeno) nearly 6 weeks ago and felt immediately better. Adeno often isn't diagnosed until after hysterectomy, as it's notoriously difficult to see. MRI seems to be the best way to see it, unless it's quite advanced and then US might see it.

Honestly, I didn't care and still don't, what was causing my issues, I just wanted them gone. Nobody can understand how much the pain and bleeding puts a halt on your entire life unless they've lived through it themselves.

I think it would be worth investigating the cause though BEFORE going ahead with surgery. If it is endo then hysterectomy may not cure it, it can grow back. You may go through months of recovery from major surgery to end up right back where you are now. And if it is something like adeno, you may not need to lose your ovaries, which will make EVERYTHING so much easier for you.

I knew before my surgery that I had adeno. And I felt better waking up in recovery than I did going into surgery. I've never felt so alive as I have since my hyster. For me surgery gave me my life back. I kept my ovaries and have had no issues.

SpaceCucumber Wed 11-Nov-15 23:42:28

For the record I had my surgery on the NHS. I went to the GP, told him I couldn't cope any more and needed to see a gynaecologist. He referred me and 16 days later I saw my surgeon who agreed to do a hysterectomy and exactly 9 weeks later I had my surgery. So all in all, from seeing my GP to the day of my surgery was only 11 and a bit weeks. So the waiting lists aren't always that bad here. smile

jemimavintage Thu 12-Nov-15 03:22:17

Polly - it's not an aversion to GA, it's aversion to the number of appointments/procedures. I would like to limit procedures to one. That's the number one most important aspect of all of this for me now. I just do not want people in and out of there....within months/years.... Ablate, wait and see, ablate again potentially, wait and see, take part of the bits, wait and see, take more parts of the bits, wait and see, take the rest of the bits - until everything's eventually gone anyway.. The laps and ablation - I just couldn't be confident that one shot at that would be 'it'. Yes, I realise that if it is endo, and I get ablated somehow at the time of hysterectomy....that that endo could also grow back... but I feel it's a chance worth taking. I'm not strong enough for the back and forth. Also, this weird experience with Cerelle has really focused my mind. I've never felt pain like this before and that pill was GP prescribed. Lord knows how many painkillers I've had to eat over the past month because of that pill. A cautious approach is for sure the best possible approach but I've mentally given up now......after the 'are you sure it's not all in your head', and the 'mefenamic acid works for me, therefore it should work for you', and 'I haven't got your notes, nothing you yourself say can be trusted', and 'take Cerelle, that will decrease your pain'. I don't want any more of that/their (unwitting) BS - NHS or private. NHS/private is all the same to me really. The docs are just as fallible, given the wrong circumstances.. Ugh wow, so negative I know - and I don't mean to be and apologise to anyone and everyone reading this - I'm normally a pretty perky/busy life-loving person.

SpaceCu - wow, you've done so well then, to have managed to come through the other end with a positive result!!

All women going through ANY aspect of this - menopause, cysts, endo, cancer, infertility, surgery....any aspect - they are true heroes in my book - because we all also have our lives to live, and responsibilities to tend to on a daily basis..


PollyPerky Thu 12-Nov-15 08:58:07

I do understand your frustration but you are also not thinking rationally about some of this because some of your worries are based on what you think would happen.

You can't tar all drs with the same brush. I've been fortunate enough to have private medical care for years and have had a private gynae for years. He is brilliant and at the top of his game. I've had scans on the same day as follow up appts with him ( same time, same building) so this to-ing and fro-ing you talk about doesn't always happen.

There are drs around who really do know their stuff so it's unfair of you to assume they are all rubbish just because you have - so far- had poor treatment. So far you have not even seen a consultant in the UK who is still just guessing at what's wrong. Don't forget that many private drs will go along with what a woman demands (ie you are asking for it all to be whipped out) to keep her happy and also put some more cash in their bank accounts. Doesn't sound as if you have had a clinical decision.

SpaceCucumber Thu 12-Nov-15 10:12:37

I know you don't want lots of appointments and you've had enough. I totally understand that as I felt the same way. But I really think you should at least get a second opinion and maybe some non-invasive testing. That could all be done in one appointment if necessary, if you're paying privately. You may find something like an MRI will give you answers as to what is going on.

It may NOT be endo. I think before you have surgery you really need to know what it is that's causing this. So you can be sure that surgery will actually help you. I found out I had a moderate prolapse I had no idea about and needed repairs and reconstruction work (all done at same time of my hysterectomy thankfully). If I'd not had an ultrasound at the time I did I'd have never known about that and my surgery would have been far more complicated. That alone was causing some of the issues I was having, which were all blamed on my adenomyosis. Hysterectomy is NOT a one appointment procedure. It's not out and then over and done with. It's months of recovery where you are unable to lift anything at all, walk much or really do anything much. I am 6 weeks post op tomorrow and still not allowed to pick up my baby for another 6 weeks, not allowed to do most types of housework, not allowed to lift anything at al, not allowed to walk too much, have sex. I feel like I'm going crazy with boredom. And I've had to have appointments post op to check everything, including internals. If I'd had my ovaries removed it'd have been worse. Not only would I have felt worse from my body being thrown immediately into menopause, but all the appointments trying to sort out the symptoms, hrt, and other little issues.

You will have lots and lots of appointments over the months following your surgery, what's a couple more beforehand to be sure you are fixing the problem and not creating another one?

And finally, if you do go ahead with surgery, I really, REALLY recommend finding a surgeon who can do the whole thing vaginally. No external scars and much easier recovery than other methods.

jemimavintage Thu 12-Nov-15 15:04:12

Thanks ladies, I appreciate your comments SO much...

I haven't got private health coverage. Anything I had/have done would be NHS other than maybe one initial consultation with a gynae. I'm also in the south wales valleys (when in the UK). The area is really struggling for drs (as is everywhere, I know...) and the doctors are mainly locum. Again - I'm not necessarily whining about this because there are people with way worse than I have.....who have to deal with that as a reality. After 48 years of dealing with drs for this and that (private on a couple of paid occasions for something unrelated), I don't have massive confidence in them, no. When I'm ill, I feel a prisoner to any particular drs own knowledge/experience level... Even the meds that one receives, most come with moderate-serious side effect profiles... A private gynae only has limited tools in his/her box.....and I'm just out of desire to wait for a pick and mix to work for me. I defo do get that a hysterectomy may come with: problems during surgery, problems during 'healing', problems relating to hormones afterwards... etc.. And yeah, that aspect scares the crap out of me really.. but... this crap scares the crap out of me too.. A month of life lost because of the so called 'knowledge' of a GP.....prescribing me something unsuitable.....and just not allowing me to even speak fully during the consult. Sure a gynae would be way more knowledgeable, but GPs should have a grasp of the basics.. I read that Cerelle does work for some with endo, does stop periods for some I guess....he wasn't to know that he'd be ballsing my life up for 4+ weeks. I'm still actually in pain since stopping the Cerelle and have zero idea why. THAT cannot be right...

It's been a strange path really... And I live quite a strange life. Lots of travel. When in the UK I'm half in the south east/half in south wales, lots of hotel stays on a weekly basis.. So as well as my fairly bad attitude....just earning a living comes with its own timing demands...and they don't really suit a cautious approach. Now that I'm in the US for the next 6 months, I figured that if I have the op, I have those 6 months to try to at least get some kind of recovery in... My daughter's in San Diego, so she can drive over....husband's here with me and not constantly out on the road like he would be in the UK...

On a side note, just reading the news today re HRT.... So we have 'people in the know' claiming that HRT is now sort of ok and GPs shouldn't be letting women suffer in silence, they should be prescribing more of it. But we then see that those people are in the pay of the pharmaceutical companies.. £1500 per 'lecture' to say that HRT is one particular case. Ugh - despise that. Equally though Polly yes, the dr here..... he sees me walk in, in trouble/pain.....and perhaps (probably!!!) thinks 'Kerching!!'...nice little hysterectomy scheduled in just before xmas.. Cos with having it done here, there is no inbetween... Aside from my lack of appetite for it, the funds aren't there for any investigative work here...far too costly...

Oh if only for a crystal ball...

PollyPerky Thu 12-Nov-15 16:18:33

Hi again

Only you can decide what you want and only a consultant can decide what treatment you need.

Having said that I'd like to make a few points that may well annoy you- so apologies in advance.

You were talking of saving up /paying for care in the US; that is no different from paying for care in the UK. I mentioned the cost and TBH you could borrow that amount / stick it on your credit card I assume if a hysterectomy is the answer and you want it done privately- which means YOU get to choose when and where. You are treated as a customer which means you gte choice and are listened to.

I don't feel you are listening here. I feel you have a very set mindset and nothing anyone says will change that.

I have had SUPERB care ( albeit privately) and I could Pm you the names of at least 3 excellent gynaes - top rated by other doctors -- see the Tatler Guide to best UK consultants- in an instant. There are good drs whether they work in the NHS, privately or both. Just because so far you have not had any faith in them does not mean a good dr is not out there- they are- you've just never met them. That's what I mean by a negative mindset where you have put up barriers that don't really exist.

I'm not going to join the Daily Mail controversy on Nick Panay other than to say he is one of the foremost researchers into menopause HRT and women's health in the UK and considered a world expert. If he has been paid ( and it IS and 'if' ) then we don't know the full story. He has a full time clinic NHS at the Chelsea and Westminster in London as well as doing research. I am sure he earns quite enough without anything he may gain from paid lectures.

jemimavintage Fri 13-Nov-15 15:22:55

Thanks Polly. You are for sure far more clued up than I am when it comes to this kind of thing. I've only really been giving it any amount of thought since....late summer...

The travel insurance won't pay for the procedure here, so it would be a case of me paying myself. I'm gonna see what the clinic cost comes back as and take it from there. The dr here is chairman of the ob/gynae 'department' at the local hospital as well as running his own gynae practice.....but equally.....if anything was to go wrong.....I'm not that would help me out necessarily (!!!)...

You've assessed my mindset correctly btw... I know I have a bad attitude. Just comes from dealing with drs over various issues...over the years. I've found them to be lacking, from my experience. And this (Cerelle) isn't the first time they've gotten me into health problems with medications.. Now that could be down to the short consult times and the limitations of meds themselves. But when I've taken my own health into my own hands - via my own research - decision making wise - I've had a better result.

This is now different tho and I do feel very much less empowered for some reason. Maybe because I see all of the choices as very crappy..... There's not really a 1. do nothing.... 2. surgery is extreme 3. hormones via pills/coil are just that, hormones...and no-one can predict their effect... <-------For me this is a 'welcome to the world that a lot of other people find themselves in'....and sometimes a LOT worse, for example with cancer..

PollyPerky Fri 13-Nov-15 19:39:49

Read the posts by Space they are very sensible.
You risk jumping out of the fat into the frying pan.
You have had bad treatment in the past and as far as I can see you are risking more bad treatment by demanding an operation that may not be needed and may not even solve your issues. You may end up worse. You have no idea- honestly- of what it will be like to have no ovaries and be straight into meno. Women have posted on forums about it being absolute hell. It's the same as a man having his balls cut off. But if you had HRT and still had endo- or it made it grow back- you'd have the same problems.
Why have you not been offered a Mirena coil or an ablation for heavy painful periods?
Why not start with the least permanent types of treatment which can be reversed eg a coil. Basically, you are talking yourself out of every type of possible treatment by assuming it won't work, and saying that a radical op is the answer when you don't even have a diagnosis. As I say, for the cost of treatment in the US you could have the same in the UK- and you might get a diagnosis which is helpful.

jemimavintage Wed 25-Nov-15 21:21:25

Soooooo, update on my particular situation again... As a recap, I'm currently in Arizona. The cost of a hysterectomy here has proven to be WAYYY out of my budget so that's off the table ($20,000 for the hire of the theatre only!! No drs, no care, no meds, no this, no that). Not back to the UK til the end of april at which time I'm gonna go drs again and take it from there...


After doing more bits and pieces of research..

I'm still NOT going down the lap/ablation/route - sod that. There are far too many risks. The only meds I'm interested in taking now are painkillers.

Endo and HRT don't seem to be a good mix either, so if there was a hysterectomy, I'd have to try to struggle on without HRT.

Will post up the 'progress'. I've listened to the pros and cons for this and that, but taking into account past experience, my own personality and my ability to tolerate uncertainty and so on - what some might call a 'cautious' approach just is not for me. If come back and do go down the hysterectomy route (and yes, there are shed loads of risks with this also), I'll post up how that journey goes, and how the journey of managing any subsequent symptoms goes.

Those who are pro-caution and pro-HRT - my choices don't mean that your choices aren't correct. It just means that - for me - I don't want to waste time on getting to where I feel I'll be heading anyway, ultimately..

The coil - yes, I was offered the coil. After consideration and research and the god awful nightmare with progesterone already - it's not for me.

jemimavintage Wed 25-Nov-15 21:25:08

so for me it's either:

1. managing with painkillers only
2. total whip out

I don't want ANY in-betweens...

SpaceCucumber Thu 26-Nov-15 10:34:38

Well good luck! I was much the same at the end... Nothing was going to work for me or my situation except a hysterectomy and I refused to even consider the ablation. Although I knew what was wrong with me and had a diagnosis. You still don't know it is endo but hopefully when you get back to the UK they can help you get a proper diagnosis.

If you have any questions about it just let me know. If you get ANY choice at all I highly recommend a vaginal hysterectomy, the recovery is so much easier, less painful and a lot quicker and no external scars at all!

jemimavintage Thu 26-Nov-15 17:58:42

Thanks SpaceCu. How are you doing recently then, with your recovery? I can't remember, do you take any hormones or owt?

SpaceCucumber Thu 26-Nov-15 21:14:21

No, I kept my ovaries hun. I'm already perimenopausal (I'm 33 hmm ) and because of other health issues I'm not allowed hormones, so it was thought that it'd be better for me to go into a more "natural" menopause (will probably happen in the next 5 years) than to suddenly shock my body with sudden menopause post surgery.

My recovery has been brilliant. I had adenomyosis. It's very similar to endometriosis (infact it's often referred to as uterine endometriosis) and the symptoms are very similar too but unlike with endo, once the uterus and cervix are removed it's cured completely. I felt better the moment I woke up in recovery. Infact I'd lived with it for so long I didn't realise how ill/bad it made me feel until I woke up in recovery feeling a million times better.

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