Just had my gynaecology appointment and the gynaecologist basically said that he thinks I've got PMDD and that I need to try this medication that completely stops my periods.. Then we can see if the pain is specific to the periods. I said but it is related to my periods I'm telling you that it is and he said said oh well this is how we diagnose it and I said this is a diagnostic medication he said yes and I said why do you think it's that and not endometriosis because I'm in pain a lot and that doesn't really correspond to PMDD from what I've seen PMDD is just mood and he said well, you're a young woman, and there's not likely to be much wrong with you. He said all your scans have come back clear and with endometriosis you get a lot of cysts on the ovaries and stuff.
Wondering about anyone's thoughts - have they tried Zoladex etc, does PMDD cause pain?
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amelia1738
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His attitude and knowledge are minimal, it’s infuriating people are still behaving this way.
Ask for a second opinion. Your age holds no bearing on this. PMDD is not a painful condition.
I had scan after scan after scan for seven years, all normal. Which was incorrect! They’re usually carried out by staff not educated enough to spot it. You should be checked by someone at the very least with a special interest in endo.
Did you take a pain/symptom diary with you? If not, request a different gyne (woman have been better for me) and take a diary with you. They take this much more seriously, it’s also easier to see the patterns (if there are any) x
He's had a number of bad reviews made about him and I can see why - he was quite abrupt.
It says online that pelvic pain can be a symptom of of PMDD but surely every period is in some way painful? That's not what I'm referring to it's the abnormal pain and symptoms I get!
I also feel like taking zoladex to diagnose PMDD is a crazy step when all the PMDD websites say it is a mental health condition, so you diagnose it via a psychiatric evaluation.
All my scans have been normal too - he's the only gynaecologist in my area available apparently!! I don't know whether to save for a couple of years and try and go private?
I took a list of symptoms in and read them out 1 by 1, but not a specific diary like off the endometriosis UK website which is what I probably need to do!
I’m sorry you don’t have many other local options that’s terribly frustrating.
If you can afford to, paying to see a private consultant/initial fee isn’t too bad (couple of hundred) but you’d hugely benefit from an MRI (I haven’t have one privately so I’m unsure of cost) but if you can swing one, they’re usually better at picking it up. That way you could take results back over to NHS for treatment. Rather than footing the whole bill.
Zolodex is a known treatment for endometriosis, I’m not sure about PMDD. It seems odd he’s offered that when they usually give it those who have known endometriosis.
I had an MRI a few years ago and they said they didn't find anything so is it worth doing one again?
This is what I was thinking! I've seen a lot of woman use it as a treatment for endometriosis.
And online it says you diagnose PMDD via psychiatric assessment as it's a mental health condition - so I'm just confused at the whole outcome to be honest.
Things change, it’s especially worth doing another if your symptoms have increased. Also worth noting you need the right people reviewing those scans too, someone with experience of endometriosis.
Personally I would say rather than an MRI specifically it’s more important you see someone who is an endometriosis specialist. I had an MRI by someone not specialist which turned out to be wrong, as were all my non specialist ultrasounds. The accurate scan was an ultrasound by someone highly specialist. I can private message you the guy but he’s expensive and London based so depends where you are.
Seeing an endometriosis consultant could also be helpful as if your man is general gynae again his knowledge won’t be as specialist.
Unfortunately as others have said you have to really advocate for yourself to access the right support with endometriosis. So if you can get someone more specialist to back you up that would really help.
I think it’s worth getting another MRI. I had scans 2 years ago that were clear, I had an MRI 7 years ago which was also clear. This year in Feb I seen Gynae as my pains were worse and were from ovulation until period and they told me I probably had PMDD and to do a symptom diary. I found this strange too as my main symptoms are pain they were making out I was mentally ill. Which I probably do get when I’m in pain 🥴. They referred back to my clear scans too saying everything looks fine and all my blood tests were fine.
They referred me for a scan in the mean time which wasn’t until 3 months later and that showed lesions so they referred me for an MRI and this time it did show endometriosis. They seen me in Gynae in October and it was a different Dr to last time, he didn’t even look at my pain diary, I tried to show him but he wasn’t interested since I now had some proof it was endometriosis. I was offered Zoladex or Laparoscopy. I opted for Zoladex which I had 3 weeks ago and so far it’s going ok pains are easing, I do still have some pressure but no severe pain like usual and I’ve not had any major side effects from the Zoladex yet. I have also contacted Gynae to be added to waiting list for Laparoscopy since that’s around a 20 week wait.
The waiting lists are so long for Gynae it might be worth going private if you can afford it. Unless there is any other hospitals you could get referred too.
Hiya, can I ask what hospital or area of the country you are for the 20 week wait for laparoscopy? I'm currently waiting for my consultant appt, was meant to be tomorrow but they called me today to rebook it for January 😤
Hi I was seen in Cumbria in February it took 5 months for that first appt. Then was seen again in October following MRI in Sept. I have been added to routine Laparoscopy waiting list since I am having Zoladex first
Sorry your appointment got cancelled, have you not been seen at all yet by Gynae? It does seem to be long waiting lists everywhere at the moment which is frustrating for everyone suffering 😢
Hi this doctor does not know what his talking about, pmdd does not cause pain and scans don't always show endometriosis, so he shouldn't just rely on a scan. I had several scans and it was only after an internal ultrasound they thought they could see cysts they booked me in for a laparoscopy. This is the best way of getting diagnosed. Zoladex is used for endometriosis pain, so his giving it to you without diagnosis to shut you up. This is not right, how long are they going to keep you on it? Its usually whilst awaiting excesion surgery, but you don't have a diagnosis. I would get a second opinion if you can. I feel for you it's so frustrating trying to get through to these doctors.
He said to keep on zoladex for 3-6 months until we can confirm the periods are causing the pain which I tried to tell him I have confirmed this myself but he didn't want to hear it. I have just requested an appointment with my GP to refer me to someone for a second opinion!
I’m so sorry you’ve had the experience of a gynaecologist who has proven they know so little about endometriosis.
Did he explain that Zolodex will be putting you into a chemical menopause? And has a number of horrific side effects. I have very severe endo and the chemical menopause did nothing much to help me and the side effects were unbearable. I also developed spinal stenosis and bone issues too.
Endometriosis is a whole body disease and whilst it does cause extremely painful periods, it causes a lot of other issues to. So the theory of just stopping them is quite outdated (UK is very behind in its knowledge, practice and treatments).
I’ve not had a period for almost 12 months (disease caused my remaining ovary to fail at 37 years old) and my disease has still progressed severely and I’ve been in more pain than I’ve ever been in.
I was fobbed off and lied to like this sfor 15 years aince I was 12, and didn’t get a diagnosis until it became obvious I couldn't get pregnant at 27. By which time the very severe form of disease had caused irreversible damage to bowel, bladder, nerves, ligaments, small intestine and gallbladder. Literally obliterated my insides.
During those 15 years of being fobbed off I did have scans, none of which showed anything significant. It is infuriating that they still rely on scans so much.
When I finally had my first laparoscopy I had to be stitched back up and my consultant said “it was the worst pelvis he’d ever seen and most severe case of endo, further surgery would need careful planning.”
Sorry I’ve gone on a bit here but I feel very strongly about this and don’t want another girl to suffer like I did. Because of their negligence I spend most of my life in bed, I will be in pain with organ dysfunctions forever.
Please feel free to message me anytime, I’m more than happy to help.
I would definitely request either a second opinion or if you can afford £200 for a private consultation with a BSGE registered consultant it’s well worth it, as they can do further investigations and treatments on the NHS.
I have a monthly injection called Zolodex to switch off my ovaries and stops my periods. It has shown me that I will benefit from a hysterectomy. As my symptoms have improved. From this experience it is a diagnostic tool.
I know someone with PMDD and they are so much better with a Prostrp injection.
The gold standard for diagnosing Endo is a laparoscopy. Endo can still be there and not show on any imaging. Ask for a second opinion, which is your right. Ring his secretary and say you want a second opinion. They may contact appointment who will send you out this appointment with another Gynecologist. You need to check they are BGSE registered and this means they’re an experienced laparoscopic surgeon and that the hospital is a BGSE accredited centre. You can google BGSE and put his name in to see and the hospital. It means they’re experienced with complicated cases. Which is helpful to know they’re able to deal with anything.
I hope this helps and if you need emotional support you can ring the Endometriosis.UK helpline and check the open times. It can take a few tries to get through as it’s manned by volunteers.
You have an army of Endo warriors with you. Remember that when they try to make you feel small and alone. 💪🏻💛🥇
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My First Gynaecology Appointment - NHS
Don't understand why my doctor won't diagnose me with endometriosis
