Am I being fobbed off? : Hi all, I only got... - Endometriosis UK

Endometriosis UK

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Am I being fobbed off?

belle555
belle555

Hi all, I only got diagnosed with endo last year (no laparoscopy - based on family history and symptoms).

My gynae has prescribed me Cerelle. I’ve been on it since December, and she said it would stop my periods (though I told her I’d been on it before and it didn’t). She’s told me that if we can use a contraceptive to stop my period, then the endometriosis will stop building, but also that it will effectively “melt away”.... is that true? Is this something other people have been told?

I’ve been trusting her implicitly, but as nothing is improving and I’m considering biting the bullet and asking to be put on a list for a laparoscopy, I just want to be sure that I’m not misinformed.

Thank you x

29 Replies

Hi Belle,

I am in the same boat .. I recently got diagonosed with endo and on a combined pill. I ll wait to see if it will stop my periods. But stopping periods only manages endometriosis tissue as it shrinks the tissue but it will not disappear totally (this is what i read on internet) and it will come back when you stop taking the pill. If a patient is not in acute pain, they usually go for contraceptive pill as first course of treatment.

luthien
luthien in reply to PABA00

See my post below.

It's also useful to note that no pill will shrink endo, it can slow it's growth.

Most importantly if you've not had a diagnostic laparoscopy you cannot formally have your endo diagnosed, so for the moment it would be suspected.

Remember that Endometriosis severity of symptoms do no correlate with the amount of endo. This if there is a lot of endo you could be in very little pain, or the opposite, so it's difficult to know what the endo is doing and where it is without actually looking.

The pill does help some women to control and manage their symptoms, but usually after a laparoscopy, or while waiting, or while deciding, or just to have a few years of normal life. Usually the pill is an option after excision surgery to manage any regrowth.

Check out the Endometriosis UK website (also in the post below)

PABA00
PABA00 in reply to luthien

Hi Luthien,

Thanks for the clarification.

So I am jumping on Belle's post as she is going through the same stuff as I.

In my case, I have been given the combined pill for 6 months and they ll do another transvaginal ultrasound. However, I was made aware of the surgical procedure. But I was seen by a gynaecologist and only ovaries area was checked. I don't know if the doc was the endo specialist or not.

I do experience stomach bloating when i hold pee so i am afraid my bladder could be involved too. Do you think I should ask my GP to refer me to an endo specialist or Shall i wait for the my next ultrasound.

Thanks.

luthien
luthien in reply to PABA00

That sounds most definitely like you've been seen by a general gynae, key indicators of this:

Transvaginal ultrasounds only as a form of identification - an ultrasounds will not show up endometriosis, it can show adhesions, PCOS, ovarian cysts and fibroids, so is sometimes used pre surgery or to rule out the above conditions.

Use of the pill for "treatment" - the pill will not treat or shrink endo, it only manages some of the symptoms by controlling hormones and keeping those levels stable, usually by reducing oestrogen.

Only checking ovaries - a gynaecologist will only check reproductive organs so the uterus, vagina, ovaries and tubes, they won't bother to look anywhere else in the abdomen as they don't have training on those areas. Hence won't know that endo can appear in other places

Quite often endo does appear on the bladder and sometimes bowel, so it's extremely important to be seen by an endo specialist; they'll want to do a laparoscopy to see what's actually happening.

You need to be referred to an endo specialist as time is important with endo; if left it can often grow, spread, cause adhesions, and perforate organs, not saying this will happen, but it could and isn't always identified by symptoms. That's why it's a good idea to get it seen and excised as soon as possible; less operations, and you can get on with your life. I wish I'd pushed sooner, like 10 years sooner :(

Just remember it's your body, so you know what needs looking into.

Check up and read the NICE Endometriosis Diagnosis Guidelines, this states what the NHS should ideally be aiming for with diagnosis and treatment. It'll give you something behind you when you need to push for that lap.

nice.org.uk/guidance/ng73

Hope that helps a bit x

PABA00
PABA00 in reply to luthien

Thanks so much Luthien. I am going to look into these resources and will ask for a endo specialist referral. Really appreciate :)

Hi, I’m just wondering how you find an endo specialist? The gynae unit at my local hospital don’t seem to be very interested.

Hi CrazyHoundLady,

I just googled specialists in my area and found one name. But need to check if that doctor is really a specialist in that category. Maybe that facebook group mentioned in this thread might be of some help.

Arty09
Arty09 in reply to luthien

Completely agree Luthien, well said! I can attest how important it is to see a specialist. I had a laparoscopy with a general gyno 10 years ago who basically just glanced at uterus and ovaries, said no endo and no reason for my pain. Ten years of further pain things got really bad last year so I paid for consult with a specialist in desperation. Was like no appt I'd ever had before, he asked such in depth questions. Had surgery in Oct and had endo excised from pelvic side walls, pouch of douglas and bowel and diagnosis of adenomyosis. I highly recommend joining 'Nancy's Nook' Facebook group. It has a wealth of facts and knowledge as well as lists of recommended specialists. The pill will not 'shrink' endo, although it can mask symptoms while it progresses. A true specialist is someone who spends most of their time dealing with endo and can identify the different appearances of it, a general gyno may not have this ability no matter how well intentioned they are. Good luck I know it is a bumpy road. Xx

PABA00
PABA00 in reply to Arty09

Hey Arty09,

Thanks for the info here.

Did you go for a private surgery? Or You can be seen by a private consultant first and get surgery through NHS.

Arty09
Arty09 in reply to PABA00

I live in Northern Ireland and had to travel to England to see a specialist as there zero specialists in Ireland, we don’t even have a properly established BSGE centre. Had to go private in the end as was desperate for help. If you live in England there is a procedure where you can be transferred for treatment to specialists in other parts of the country via NHS. I’m sorry I can’t remember the name of this process. If you find an NHS specialist near you it’s worth asking their secretary if they can help advise you

belle555
belle555 in reply to Arty09

That’s so awful! Are there private specialists in Northern Ireland or did you have to go private in England?

belle555
belle555 in reply to Arty09

Thank you all so much. I've been taking a few days to process this all, but it does sound like my gynaecologist is general (despite listing online that she can deal with endo and taking me on) so I'm looking into finding a specialist.

I was considering going to my gynaecologist and asking for the surgery, but it sounds like that won't achieve much. I feel like I haven't really been listened to, and it sounds like she's taking advantage of me knowing nothing about endo up to now!

I hope you're all in a good place and getting the help you need, thank you again for helping me navigate this nightmare! x

Arty09 luthien

Hi. Your gynaecologist doesn't know enough about endo or is totally fobbibg you off. Contraceptives does not stop endo growing, or shrink it. It is a means to try and cope with the symptoms that's it.

belle555
belle555 in reply to Christin_a

Thank you!! Need to find a specialist it seems!

Hi,

In summary yes, yes you are. But we all were to some degree as we all didn't know what to do / what to push for, and just listened to our GPs. This is what the forum is for - a place to find more information, to ask questions, so you're doing the right thing!

Firstly - more info. Have a read through the Endometriosis UK page, there's lots of documents and help there from first symptoms, what it is, right through to surgery options.

endometriosis-uk.org/

Secondly - the only formal diagnosis for endo is through a diagnostic laparoscopy. If you've not had that then at the moment it's all just guesswork. Your GP is not specialised enough to know specifically about endo or any other problems such as fibroids, PCOS, ovarian cysts, they may have an interest but little training unless they read up in their own time. You need to ask to be referred to an endo specialists - they know the most about endo, where it is, where to look for it, and how best to treat it. General gynae is where most women get referred to, and although they know about gynae issues they often aren't trained much about endo so will only consider the reproductive areas ignoring checking the bowel and bladder (where it can appear).

Thirdly - No endo cannot be melted away on any form of hormones - it requires oestrogen to grow and since we naturally produce oestrogen endo will always grow. A combination of hormones can slow the growth down and could reduce some symptoms, but endo will always grow and spread. This is something which GP and general gynae are well known for doing - put the woman on a hormone - then you'll go away and they'll have done their "job".

Fourth - It would be good to read up on the NICE Endometriosis Diagnosis Guidelines, this states what the NHS should ideally be aiming for with diagnosis and treatment. It'll give you something behind you when you need to push for that lap.

nice.org.uk/guidance/ng73

I posted a few years back on what I'd been through so others could draw inspiration and knowledge from my experience and know what to do if they feel they're being ignored.

healthunlocked.com/endometr...

Feel free to ask any questions x

belle555
belle555 in reply to luthien

Thank you so much for this.

Reading your story, I'm so sorry that it took so long for things to get sorted out for you.

I'm contacting specialists at the moment, but will definitely be reading through the advice and guidelines to make sure that I do know what to push for!

Wow. I want to be gobsmacked reading this but I know how we are treated so it doesn’t shock me hugely.

Everything I was going to say has been mentioned and explained perfectly by the ladies above.

I’m just so angry for you that a “Dr” can get away with this. Melts it? That’s a first on me. I hate how they think they diagnose you when it can only be diagnosed by a lap. Which you obviously need.

Best of luck with everything. I’d also change Drs right now. She knows nothing and I wouldn’t be able to trust a word that she says from now on about anything at all. x

Thank you! I think she's taking advantage of my youth and ignorance and hoping I'll go away! I will be... to a new doctor!

Birth control doesn't treat Endo, it can only sometimes relieve symptoms but you may develop other side effects anyway.I have been adamant with Dr's and the specialist that I will not be taking any form of birth control or long term pain management. I am now on the list for a laparoscopy.

belle555
belle555 in reply to Hunter-23

Yes I think I will need to join you on that list so that I know for certain what I'm facing! Best of luck with it x

Everything that's super important has been said already, especially the birth control stuff!! The only thing I will add is that in very severe cases, endo CAN be seen through an MRI and diagnosed that way (as mine has been - we aren't doing a lap for diagnosis, went straight from MRI to 'it's everywhere and you definitely need surgery to excise it, which was confirmed by the endo clinic when they saw the results). That said, it's pretty rare - I think it has to be rather severe and in locations the MRI can see. Effectively, a laparoscopy is the only test where they can say that no evidence for endo means you don't have it - for all other tests, that's not the case, so push for a lap if other tests are negative but your symptoms are still there or getting worse. BUT, some tests can show endo enough to diagnose it without a laparoscopy first.

PABA00
PABA00 in reply to hrcArch

Hi hrcArch,

Thanks for the info here.

So do people get two surgeries one for diagnoses and one for removal of endo tissue? OR it is done in one go. Can you please shed light on it.

Thanks

hrcArch
hrcArch in reply to PABA00

I can't say for everyone, but I've heard many people have one surgery for diagnosis and one for excision. Many people have them at the same time - a surgery for diagnosis, but if they find endo and can remove it, they do. It all depends on each individual case, I think...

luthien
luthien in reply to PABA00

I had my diagnostic and excision lap in one go, but was done by an endo specialist.

belle555
belle555 in reply to hrcArch

I had an ultrasound but when nothing showed up they were quite dismissive... don't think she was a specialist either so was probably a waste of time!

hrcArch
hrcArch in reply to belle555

Yea, not entirely a waste of time, but I had two ultrasounds that only showed cysts on the ovaries, so they told me it was nothing. Luckily my GP said 'I'm not so sure' and urged for more testing (including ultrasounds). Definitely still seek help if the symptoms are still there and nothing is working, because it means the problem (even if it isn't endo) is still definitely there!! Don't let anyone tell you that kind of pain is all in your head 🙂

Sorry if someone else has already said this ... double your Cerelle dose. I take 2 Cerelle mini pills every day

belle555
belle555 in reply to Hattie71

Hi Hattie, how do you find that?

I was on Cerelle a couple of years ago and found that I was really emotional so ended up coming away from hormonal contraceptives (until my gynae recommended it because of the suspected endometriosis). As a result I'd be hesitant to up my dosage even if my Dr recommended it!

I feel ok at the moment to be honest - taking one tablet a day didn’t stop my heavy bleed and pains. I’m 50 now so approaching menopause but my endo symptoms were getting much worse. Taking two tablets has meant I have been period free for about 6 or 7 weeks which is good for me. I am thinking of trying to reduce to a tablet and half to see if that still works ... time will tell.

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