Feeling silly, it seems I just have painf... - Endometriosis UK

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Feeling silly, it seems I just have painful periods

madeline-ella profile image
madeline-ella

Hello,

I’m feeling a bit overwhelmed and stupid. I saw a BSGE gynaecologist recently who said he was pretty certain I don’t have endometriosis. He did an internal exam but didn’t listen to any symptoms or history (I completed a brief form beforehand), just read my (clear) ultrasound notes. He told me my option was the progesterone only pill (I can’t take the combined) as it was just painful periods, and if that didn’t help to return in 4 months. He obviously knows what he’s talking about being BSGE but I can’t shake the worry the pill will “mask” my pain and there’s something underlying. He said my periods would probably get less painful as I got older but they’re just getting worse. Now I’m left wondering what is causing all my symptoms if not endometriosis.

I’m returning to uni in September and I’m terrified that I’ll return to the gynaecologist still in pain in 3 months just as term starts. Of course I’m really glad he doesn’t think I have endometriosis, I just really wish he’d let me ask my questions. I just feel so overwhelmed and silly as he definitely thought I was wasting his time. So sorry for the long post - does anyone know about the progesterone only pill? xx

37 Replies

Hi! I'm sorry this was your experience, it's really not nice to feel dismissed like this. I was on the progesterone only pill for a while (can't take the combined either coz of migraines). It was okay, I found it quite annoying the irregular bleedings I got with it, and how strict you have to be with taking it, so I decided to go on the implant instead; it worked so much better for me, I'm a student also and found the mini pill really difficult to fit into my very varied routine. It worked fine, and my periods certainly got lighter with it, but it will be different for each person unfortunately. Might be worth taking it and see what happens, or discussing other progesterone only medication with your GP. Hope this was helpful xx

Hey thank you so much for replying, that’s really helpful! I hadn’t considered the implant so that’s a really good suggestion. I think discussing with my GP would be a good idea. Did the implant and pill both help with pain? I suppose I’ll just have to try it out and see as like you say it’s different for everyone xx

The implant had very similar effects as the pill for me, and it definitely did help with the pain. My only thing is, despite the ‘it works for 3 years’. I’ve found in the last 4 months my heavy bleeding and pain return (there’s some evidence to say people with underlying health can have implants/coils not last as long, which really is just another reason to continue investigating).

I’ve found (in my personal experience) thats GP surgeries and hospitals attached to universities / care for exclusively students, tend to be a lot more responsive to young people’s needs, so it might be worth changing GP in September to the one at uni and ask them to re-investigate. If you say it’s effecting your studies then they’ll hopefully looking into it. It might also be worthwhile emailing your university welfare/well-being team now to update them on what’s going on, it’s always a good idea to keep them in the loop.

Sorry for the rambling xx

That’s all really helpful thank you - you’re not rambling at all! Unfortunately my uni GP surgery is a really small one and have been uninterested in the past but maybe I’ve just been unlucky. That’s a really good idea about emailing my welfare team - I’ve paused my studies and have to submit evidence I’m “better” in July in order to return. Unfortunately I’m finding I’m just feeling worse and worse as time passes and of course I’m terrified July will roll around and I’ll be in the same situation! So stressful xx

that's so crap! It's just awful how so few doctors seem to listen, maybe worth just nagging them. But definitely keep in contact with your welfare team, they should be able to guide you to mental health services for the stress (for uni but also complications with your health). I get your stress though, I'm currently having a really bad flare up right in the middle of exam season, just not great timing! I'm gonna be doing a year out partially cos of what's going on with my health. Feel free to message me though if you want to chat, I'm more than happy too! xx

I’m so sorry to hear about your flair up, especially during exams, that must be so tough :( I’d love to message if that’s ok! xx

Of course you can message me! Please feel free x

Hi! I’m sorry to hear that has been your experience. From what I’ve read, it’s possible to still have endometriosis and it not show up on the ultrasound. But could be confirmed with a laparoscopy.

I started listening to this audiobook, “EndoMEtriosis” A Guide for Girls by Tamer Seckin MD just from my local library. It’s pretty informative so far. It sounds like most women do not get the diagnosis soon enough, feel crazy, and aren’t believed by most.

I am 21 years old. I don’t have as intense pain as others do and I don’t know if I have endometriosis. 1 in every 3rd period for me will leave me debilitated. In the past and now, I have had bowel issues, abdominal pain, intense bloating, and a lot of nausea - my doctor did a limited number of tests. They decided that was all due to me being anxious/depressed, being underweight and not eating enough. (To be fair, I felt defeated and accepted this). I am still having issues and it’s so easy to feel like I’m silly as you said. I am thinking I might have IBS, food intolerances, and/or endo.

Part of the stories in the book describe the heavy bleeding, irregular periods, and pain that is persistent outside of periods... one girl was given like morphine and was still in pain :( but she had a LOT of endometrial tissues, scar tissue, and cysts.

Part of believes my mild pain and severe period pain could be endometriosis in beginning stages (stage 1). It’s hard to feel like there’s something wrong with your body but no doctor will validate you and your pain.

Also, I haven’t seen a gynecologist yet.

Have you tried the endo diet? It recommends decreasing foods that are inflammatory and increase estrogen production. Tia Mowry, the actress from Sister Sister, wrote a book on her diet and the power of food in her life with it. (It’s basically everything I’ve always eaten on a daily basis: gluten, dairy, processed sugars, high caffeine intake, certain FODMAP foods). I feel sick after eating a lot of these foods.

Anyways, sorry I can’t answer your question regarding the progesterone only pill! I hope you find more understanding and healing in your journey! I know we all want to be rid of the pain.

Hello! Thank you so much for the recommendation - even if I don’t have endometriosis, it’s such an interesting topic. It sounds as though we’re having similar issues - I also get absolutely horrendous bloating. I haven’t tried the endo diet - I’ve tried FODMAP which helps a bit but certainly doesn’t resolve it, so maybe that’s worth a try! I totally know what you mean - feeling something is wrong but everyone telling you otherwise. I really hope you get to see a gynaecologist and get answers - thank you so much for replying :) best of luck to you too xx

Hey, sorry you were fobbed off like that, I was put on lots of different pills and none of them helped me with my painful periods. I’m on the depo injection now to stop them completely but I still get the occasionally monthly cramps with that but they’re much easier to handle - plus there’s no actual period. I would maybe ask to see a different gynae doctor for a second opinion as there’s no way to tell from ultrasounds and internal examinations if you have endometriosis or not.

The only other thing is maybe asking your GP for stronger painkillers for when you’re on your period. Baths, hot water bottles, wheat teddies and heat pads are super helpful also and some people say electrical impulse machines help also.

I hope you get answers soon! It’s horrible not knowing and waiting around.

madeline-ella profile image
madeline-ella in reply to KLynnH

Hello! Thank you for your help - I just can't work out whether I should try the progesterone only pill or go back to the GP. I've had so many problems over the last year I think the GP genuinely thinks I'm insane! I always use hot water bottles (along with painkillers) but I often end up giving myself red marks on my stomach that take a while to go so I'm a bit scared of giving myself them. Silly question but does something like co-codamol work better than naproxen or will they give me something else? xx

KLynnH profile image
KLynnH in reply to madeline-ella

It depends on how you react to the pain relief really. I had a bad stomach after taking naproxen and I pass out/vomit if I take co-codamol. I’m now taking dihydrocodeine which helps me. The pain doesn’t go completely but it’s certainly more manageable - I can just get a little drowsy sometimes

Hi

With Endo - painful periods are the main cause- as blood not being released in a

normal period.

Be aware of taking the pill for long periods of time- GP - heavy bleeding, etc.

Look after yourself its your body and things will change over time- you are not silly

it still might be Endo- as it can take up to seven years to appear-as its scar tissue.

Keep fit and well, all the best

Hi,I’m sorry I can’t really help but I’ve recently had a similar experience (though with general gynae) and found it very upsetting, in the end the consultant put me forward for a laparoscopy basically to prove to me nothings wrong, so I would just push for one anyways if you can. I was also told to go on the pill for 3 months straight and then a break and it was my only option even if endo was found.

Hope this just makes you feel a bit less crazy, posting really helped me after my appointment x

madeline-ella profile image
madeline-ella in reply to Cambk

Hello! I'm so sorry you had a bad experience too, thank you so much for replying - it really does help to hear from others. I felt so lonely and stupid after my appointment. I've had so many tests that have all come back completely clear so I worry if I did have a laparoscopy it will just come back clear and I'll have made a fuss over nothing again! I'm sure you can relate to the fears with your consultant being so opposed. I'm glad you've been put forward for a laparoscopy though and I hope you get to the bottom of everything xx

Endometriosis does not show on an ultrasound. The only way to diagnose is via a laparoscopy. Your consultation was very poor and I strongly feel you've just been fobbed off. To decide purely on an ultrasound shows woeful ignorance of the condition whether he's at at BSGE or not. I'd go back to your GP, tell them you think you've got endometriosis and would like to be referred to a proper specialist. Tell them all of your symptoms and that you didn't get a chance to explain to the hospital consultant.

Good luck! xx

Hello! I did consider going back to the GP but I think they’re going to think I’m a total hypochondriac seeing as I’ve already been told “all clear” so many times on so many tests. I’m worried that I don’t have it and am being a major pest! Are you allowed to request a second referral? xx

Of course you are allowed a second referral. Missing endometriosis at laparoscopy even if you have all the symptoms is extremely common. I would insist on a second referral. You're not being a nuisance or a hypochondriac. That's how they want you to feel so you go away because their incompetence is being shown up!

Get your courage together and say you aren't happy and would like a referral to someone else. If possible, do some research and find a name of someone you think could actually help. Some doctors appreciate if you do that then they can just do a letter or email.

Good luck xx

ps to my message, if it can even be missed at laparoscopy, the person you saw must have a high opinion of himself thinking he can diagnose you without even taking a medical history. Not acceptable at all! xx

I'm so sorry the specialist hasn't been helpful!! The only way endo can be ruled out for good is through a laparoscopy, which he should know if he's BSGE. Many women have clear ultrasounds and still have endo. Have you had an MRI? It might be good to ask for one. The bottom line is that you are still in pain, and very painful periods aren't normal. The symptoms are still there, as is the cause. There's no reason you can't be put on the wait list for an MRI while you try other treatments. If he doesn't offer concrete help, I would suggest asking for a different specialist.

I've found the hormone treatments all have made things worse for me, and depending on pain, I have often asked what they expect me to do to cope while we wait 4 months to see if the hormones are working. Be as honest and direct as possible - 'I will end up in A&E regularly if I don't get help for the pain soon.' I've also used that line with GPs who have refused to see me, basically asking 'if you aren't going to help me, who is?' Pain isn't normal, and severe pain during your period isn't normal. The main thing the mini pill will do is reduce bleeding, so if your pain comes from that, it might help, but it sounds like he doesn't know whether that's the root cause of the pain.

The other thing I've found where I am is that even the specialists tend to offer a one-size-fits-all type of treatment. They've been pushing the mirena coil on me for about 6 months now, and it's still listed as part of my surgery even though I've said I don't want it. For me, hormonal treatments haven't worked, and none of them can tell me how a mirena coil would be any different. But because it works for most women, they keep assuming it'll work for me despite evidence to the contrary, and they keep pressuring me to do it. Remember that you know your own body better than they do. If someone isn't helping, then it doesn't really matter how qualified they are - the pain is still there, so the problem is still there, and you need someone who will pay attention to the problem.

Hello! No I haven’t had an MRI - I thought about bringing that up before I went in but he was so sure I didn’t have endometriosis let alone deep endo it just wasn’t going to happen! I’m sorry hormones have made things worse for you. To be fair I haven’t tried them yet which is probably why he suggested it but right now I’m being given so many different meds I’m a bit nervous to add another one to the mix! I know what you mean about knowing your own body - it feels so strange to me I’ve got all these co-conditions and pains that all suddenly seem to be arising/worsening over the last year. I just need to work out whether to try the pill or not. Thank you for all your help and wisdom and best of luck xx

Hi, Endo didn’t on any ultrasound or other scans I’ve had, I had a lap with gynae not BSGE, who said the only way to tell was lap. Turns out deep when he thought superficial. A hysterectomy with BSGE who said beforehand no rectovaginal endo, went ahead with op and didn’t tell me no MDT meeting, I’d been waiting all year for them to do this, and on op report no mention of checking bowels when there were lots of adhesions taking the uterus out. So I’ve put in a complaint and having to start elsewhere. He might be experienced but they are under pressure because of covid. It’s worth considering his idea as it may help, but won’t necessarily confirm endo.

It’s really hard to make decisions at times.

Hello! Gosh I’m so sorry they didn’t check properly and you’ve had to restart elsewhere :( You’re right - the pill probably is probably a good idea, I’m just being given so many different medications at the moment I think it’s making me nervous other stuff is going on! As you said, it’s so difficult trying to decide. Best of luck with everything you have coming up xx

It does make you nervous to try new things when various options have already failed. We seem to keep trying or wanting to try new things. Might be worth just jotting down meds, what they do just to gain some perspective on what you’re taking and why. The doctors don’t, even GP’s completely ignore contra indications at times.

Thank you 🙂, MRI Friday, go from there.

Hi there!

I can tell you as a person who came out of diagnostic laparoscopy yesterday with a treatment and an endo diagnosis. I don’t have my notes yet but I was told there was a lot of it.

I’ve been having issues with what I thought was just a cyst and then coil pains and then feeling sick and bloated for over 7 years and after last year when I had some sort of discomfort: almost always bloated, period pain for 2-3 weeks a month, sickness and sharp pains I decided to speak to my gp. None of the pain was too terrible but all combined together I was starting to notice it was affecting my quality of life. My gp thought it can be endo due to cyclical nature, but the gynae was not convinced: I have been on a pill/coil hormonal treatments for 15 years of my life and she said it is likely this would have stopped it from developing. She is not BSGE approved for endo but I selected her as she indicated particular interest in it. In the end after doing some other tests the only thing left was to try and do a diagnostic laparoscopy and I was told essentially chances of finding something were 50/50: there was nothing besides my pain that was indicating I might have it. I doubted myself if I am over reacting, dramatising and should just ‘man up’ it’s just what women have to go through. But after yesterday - there we are: I have it and it was not all in my head. Hormones just slowed it down and made it less obvious for me to notice until it got worse, but I know from reading this forum it’s quite common to try hormonal therapy first before other more invasive treatments.

I guess my point is: if you feel something is wrong with your body there is nothing wrong with doing anything you can to ensure you are healthy and finding out the truth.

Allerton42 profile image
Allerton42 in reply to st07

Hi, I just wondered the treatment you just had during laperoscopy, did you have excision or diathermy. I had diathermy but as I didn't continue with the pill the pain was back less than year but some would say diathermy isn't the best way to remove endo.

st07 profile image
st07 in reply to Allerton42

Hi Allerton42, I don't actually know as I have not received my letter with the details yet. When I went to my consent meeting I have asked what would be the ways they'd get rid of it as I have read similar stuff to you that excision is best. I was told they'd do a combination of several methods depending on where endo is and the severity of it, which made me feel quite reassured as the doctor is qualified to do them all (I read some use ablation only because that's the only thing they are trained on). I will get back to you once I've received my notes :)

I have also heard that removing endo is very much not the end of it as it can come back, and so got the impression hormones and some other medication might have to be a permanent option...

Allerton42 profile image
Allerton42 in reply to st07

Yes that sounds right, I feel reassured you probably had the techniques used for a better outcome. I'm considering mirena next but it's not easy to decide that's for sure. Please do let me know how they describe they removed it. Waiting for hopefully surgery. Best wishes

st07 profile image
st07 in reply to Allerton42

Got my letter: it’s said majority of the endometriosis was excised with some of it ablated depending on location, the letter does not specify which areas were done in which way.

Allerton42 profile image
Allerton42 in reply to st07

Thanks for letting me know, sounds reasonable. 🙂

madeline-ella profile image
madeline-ella in reply to st07

Hello! I’m sorry you had to suffer for 7 years, that’s horrible :( I’m so glad you know definitively what’s wrong though - that “all in your head/am I being over dramatic” feeling is so awful. Thanks so much for replying, especially so soon after surgery! It’s so heartening to hear people who’ve got to the bottom of their symptoms. It’s so hard to know what to think - if something more is going on or I should just accept that I’m at the painful end of normal and should take the pill!! xx

Just because he's at a BSGE centre, doesn't automatically mean he's competent. Which bsge centre was it? It's worth calling the endometriosis nurse at the bsge centre to ask to be transferred to the other consultant there (if there is one) will take a bit of time but you'll get an appt.

Definitely worth a second opinion as there's no such thing as just painful periods. Something is always causing it.

The fact that he didn't listen to any of the symptoms should show that he (most likely) hasn't made a informed judgement.

If I were you I wouldn't let it go xx

Hello! I could be wrong - I think it wasn’t a BSGE centre but with a BSGE doctor. It was via insurance so not sure I can call the nurse as think it’s a bit different. It was probably silly of me as I think he’s used to severe/confirmed endo cases and so didn’t really want me in his office! He just said it was primary dysmenorrhea. Now I just really don’t know whether to just go on the pill or keep asking xx

I'm going to send you a private message x

Hey, really hope you get some answers soon— please keep pushing! My ultrasound was clear but my MRI revealed cystic areas and adhesions , a lap would reveal all but obviously you have to tick boxes for that. Can you request an MRI?

Just curious— how did you manage to get seen by a BSGE consultant without confirmed endo?

Hello! I saw a BSGE consultant as I’m insured and was told to choose a doctor. I chose this consultant as he was attached to a BSGE centre and all his reviews were amazing. Retrospectively it probably wasn’t a good idea and I think he thought who does this girl think she is - coming here with no confirmed endo and hasn’t even tried the pill!! Probably why he was extremely unimpressed to find me sitting in his office. I just didn’t really know any better at the time. I’m also reluctant to go on the pill as I’m currently having so many different medications thrown at me from every direction. I don’t know about requesting an MRI as he didn’t mention it and I never got the chance to ask. I know ultrasounds can be clear and then endo shows up on laps but this doctor was so convinced I didn’t have it and seems so experienced I just don’t know what to do now! Sorry for such a long reply xx

Hello, I'm really sorry (and a bit confused!) to hear that you've had this experience at a BSGE centre. As others have said, you can absolutely ask for a second opinion. And it's widely known that endometriosis can still be there, even if it's not detected on an ultrasound or MRI - this was the case with me - all scans came back clear but I was put forward for laparoscopy as my symptoms persisted, and it was only through that that endometriosis was diagnosed. Wishing you all the best with it.

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