tigerlily275 years ago

Also can endo still grow despite being on the pill?

Aaliyah16 in reply to tigerlily275 years ago

My understanding is that the hormones suppress the growth of the endo

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tigerlily27 in reply to Aaliyah165 years ago

So why would I even need to do another MRI ? Last one was in February? Makes no sense, does it? Thank you again. Xx

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Aaliyah165 years ago

Hi,

I feel like what you’ve experienced mirrors my experiences too!! I saw a gynae consultant at Guys and St Thomas recently who was just as you described your gynae; very dismissive and focused on the fact that my ultrasounds have been normal. I have also done my research and read a number of posts in this forum and you are definitely not imagining your symptoms! Don’t allow Drs to treat you otherwise- stick your ground!! I’m also not keen on a lap as I’m not diagnosed either but as you say I really want to know what is going on! If a Dr is not treating you with respect see another until you find someone who does!!

You may find reading the NICE guidance on endometriosis useful. It clearly states the following:

“Do not use pelvic MRI as the primary investigation to diagnose endometriosis in women with symptoms or signs suggestive of endometriosis“.

Don’t hesitate to make reference to this guidance during you appointments as it’s your right to seek the right treatment.

You can google NICE guidance for endometriosis and read further if you wish.

Best wishes and take care!!

tigerlily27 in reply to Aaliyah165 years ago

Wow! That's so good to hear and thank you so much for finding that quote very handy! I live in France but I could still use it and I could maybe find the same in French. i will do my research now on that.

I'm very sorry you have had the same experience. Have you managed to get a diagnosis yet?

I have been very surprised by how little the doctors seem to know about endo and they keep saying things and I think I know that isn't right. But it's so hard to challenge them because they are a doctor and so must know better. Hard to stand up for myself, but you are right I must may not matter to them but does to me. I just hope the next mri shows something, anything ! Hope you are doing ok and thank you again! Xx

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Aaliyah165 years ago

You can request to see a specialist endo consultant at an endo specialist clinic. Visit the BSGE website for further information. They should be more helpful in ensuring that you are diagnosed promptly as referenced in the NICE guidance

EmmieH5 years ago

Hiya! I'm so sorry you're going through all of that. It's such a frustrating and annoying thing when the people who are supposed to be there to help just don't seem to want to. (I had a doctor tell me that my pain was normal because I am 'a woman of childbearing age') I'm afraid that all there is to do is to be your own advocate. Whether that means putting your foot down with this gynae and asking for the lap or maybe finding a different gynae who will listen to you.

Obviously I'm not a doctor and can't say whether you're supposed to get pain or not when on the pill. But I have the coil fitted and still get ovulation pains and just random pains throughout my cycle and I don't understand why having the coil (or the pill) would stop that.

I hope that was helpful, the best thing for me has always been knowing that there are other women like me out there. I hope you're feeling better soon ♥️♥️

tigerlily27 in reply to EmmieH5 years ago

Yes thank you so so much! It does help knowing there are others too. In fact I have received more help and knowledge from this website than anywhere else. The women on here, like yourself are amazing and are actually the ones who provide the most education and care through their experiences.

'Woman of childbearing age' ... Wow! The doctors should be obliged to spend time on here before treating women.

Thank you for your reply and you are right about needing to put my foot down, I don't go back until December so I guess I have time to practice. 😂

Hope you are ok! Xxxx

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Holleymuzz in reply to tigerlily275 years ago

After years of being told there wasn’t anything wrong with me..

once went to ane in severe pain, after few hours was told I had constipation and was discharged with laxido, passed out as soon as I left the room was re admitted, had surgery next morning to find a very large cystic tumour , they removed it didn’t bother looking around and discharged me the next morning. But my pain continued months later sent to gynea did a laparoscopic surgery found a little cyst and discharged me. Pain continues, was seeing an emergency dr for the pain who suggested I be referred again, after clear scans they did another op, found endometriosis on my bowel bladder and pod. He burnt it off told me in recovery it was a tiny amount not the cause of all my pain. I did some research found my nearest BSCG clinic which is an hour n half away. Had scans and mri which showed nothing, reluctantly they agreed to one more laparoscopic, scheduled me first before they didn’t think it would be a long op, in and out quickly. They found endometriosis everywhere on my pelvic walls, rectovaginal, rectum, on my tubes from kidneys and my right ovary had twisted, I had extensive surgery for over 3 hours. Was 20 months from the surgery that found the endo to this last one 2 weeks ago. The whole time this was happening... I was on the pill! X

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tigerlily27 in reply to Holleymuzz5 years ago

Oh my goodness! What a journey you have been on! I'm so sorry, but so glad you finally have a reason for your pain. Thank you so much for sharing your story. And well done for carrying on seeking help. I will make my appointment today for the MRI but won't give up whatever it says! Xxxx

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Holleymuzz in reply to tigerlily275 years ago

Don’t ever give up, don’t ever settle, they know anatomy but no one knows your body like you do! X

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Elm985 years ago

I swear I have ovulation pains on the pill too...even though we don’t ovulate on the pill. I also swear I have period cramps every month even though I take my pill back to back so have a period (withdrawal bleed) every 2 months.

I was diagnosed with endometriosis a month ago today actually after going back and fourth between the gp and gynaecologists for nearly 10 years. I had a lot of people doubting me, telling me “I was young and the pain was just my body getting used to periods” and even doctors telling me that I just needed to man up and take some painkillers because it was all it my head. In the end I had to go in there and quite literally say to the gynaecologist, I don’t want anymore medications thrown at me because we can’t treat something when we don’t know what it is. He looked a bit shocked that I had been that abrupt with him and went, “what do you want?” And I told him I wanted a laparoscopy as I knew it was endometriosis and he got the consent form out...fast forward to a month ago and he came back in the room from surgery and told me I was right about the endo and that he had cut it from my rectouterine pouch, my left ovary and that he had unstuck my frozen pelvis.

I would honestly say if you’re sure it’s Endometriosis then don’t give up, ask for a second opinion doctor, be a little bit blunt and tell them you want a laparoscopy and tell them you want to be more involved in the process of finding out exactly what is wrong, if you have good reason to believe you have it and a lot of symptoms; although it shouldn’t it takes doctors some persuading as I’ve learnt over the years.

tigerlily27 in reply to Elm985 years ago

It's good to hear someone else has that same pain. Im sorry you do but glad to know it's not just me. Thank you for your story. It's so helpful and again makes me see the need to carry on fighting. I think I will copy what you said to the doctor and see what happens because yes, I'm sure it is endometriosis. And I just want a diagnosis. Xx

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Jujuhawk5 years ago

Hi I hope these ladies have empowered you! I was fobbed off for years so my message to you would be do your research! I paid to go private to an eminent endo specialist. No scans etc or notes, just me and my symptoms. He was amazing and diagnosed exactly what was happening. I then went back on to his nhs list and had my 2nd lap(my gynaecologist gave up on me after my 1st, saying “sorry love, can’t do anything!” ).So 10 years later I’m now pain free,13cm cyst free! So find the best and you will get yourself free from this. I had chronic ovulation pain, but not many drs recognise or believe in it! It’s your body, just find the right person to help you and good luck! Xx

tigerlily27 in reply to Jujuhawk5 years ago

Thank you for that. Yes I definitely feel much better about it now. And thank you for your story too. Did you have a lap and they missed it on that, the first time?

and again good to hear that ovulation pain on pill seems to be normal. I'm glad you have found the help you deserve and thank you for using your experience to help others like me. Xx

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Jujuhawk in reply to tigerlily275 years ago

Hi no by the time I had my first op I got diagnosed with a frozen pelvis and my gynaecologist wouldn’t touch me! That’s why I’d always say go private to a specialist and not wait around for drs who don’t help like I did. Like everyone else’s advice, don’t ever be fobbed off and - go get your life back!! Xx

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tigerlily27 in reply to Jujuhawk5 years ago

Wow! Lesson learnt! I'm so sorry you had to go through that !

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JenBrown19835 years ago

I have started the combined pill 3 months ago, i was told to take it 3 months solid then 7 days pill free. This is the end of my first 3 months and its made a massive difference. I get severe ovulation pain, however the pill seems to have settled that. I have noticed twinges at certain points of the month though plus cramps when i would have been due my period.

My endo was confirmed after laparoscopic surgery in march. I had large cyst removed and had to be all cleaned inside. My gynae told me that the only way to 100% confirm endo is laparoscopic surgery.

I hope you get help soon mrs xx

tigerlily27 in reply to JenBrown19835 years ago

Thank you so much for that! I have just finished taking the pill continuously,(kind of improved) like yourself, but now the gyne wants me to take it the normal way. I just have had my first period and was in pain for at least five days before it started, agony during and because mine last nine days, a few days later was in more pain for five days ovulation. So doing it monthly, for me seems stupid, I don't understand why I have to do that. Because I only have a few days with minimal pain!

Anyway! I will stick up for myself next time! Try anyway!!

It's so good to hear that you had a successful diagnosis, surgery and now treatment! Good to think there is light at the end of the tunnel! I will hopefully be able to take mine in blocks of three months again soon! Thank you so much !

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vmagpie5 years ago

Hello

I really feel for you.

How can they brush us off with “bad periods” ? It baffles me.

It’s so hard and exhausting having to fight each step and still being pushed in to a trial and error roundabout of symptoms vs side effects, trying and failing with various contraceptive methods.

I’ve experienced bad symptoms since I was 17 (I’m 34 next birthday). I’ve taken maybe 15 different types of contraceptive pill. I’d either get severe pain symptoms, severe emotional/mood symptoms and always had different types of bleed with different pills, long drawn out ones or short, excruciating, heavy ones that floored me.

I tried the contraceptive injection for a bit and bled for 33 weeks solid, was anaemic for ages after, still having pain. But no one would listen, I felt really dismissed.

I had two babies close together in my mid twenties so I got relief from symptoms being pregnant or breastfeeding for 2 years, but after my second it all came back with force. I had a few ultrasounds, got put on more contraceptives, tablets for pain. Heavy bleeding, depression.. I thought I was going mad and was referred to community mental health at one point, my pain and pms symptoms were literally driving me insane...

Shit, sorry this isn’t supposed to be a life story...

cutting short, haha.. I’ve had another baby, had the coil fitted, am on antidepressants and still have ovulation pain, with all the endo symptoms and low mood leading up to my non existent period (as I haven’t bled for months now) and I have a lump in my pelvis one end of my csection scar that has been growing for 2 years

And I’ve only just been taken seriously after seeing a locum gp who mentioned endo followed by a trip to a&e when the pain got too bad and refusing to be sent home with painkillers (I’d been taking painkillers for days leading up to this severe bout of pain).

I saw a junior dr on gynae day ward who booked me an appointment with a gynaecologist... waiting for mri results before lap date is booked...

after all that.. what I’m saying is don’t be fobbed off, because months turn into years.. 18 years in my case and it’s bloody exhausting.

Push push push for what you need and don’t give up.

Phew 😅 I’m exhausted haha

Take care of yourself

tigerlily275 years ago

Well done for that and thank you! I really really hope you get an answer after all this time for your pain, let me know if you do! 18 years!! Unbelievable! We definitely need to push for ourselves as you say. I have felt like packing it all in, since seeing him, I was so disheartened by it all. But I know now, I must keep fighting, thanks to all you ladies!! I will never let them fob me off again! If they do, I will try else where and persist.

I'm so relieved to hear that you too have had a similar experience with ovulation pain, despite not ovulating and pain for a 'non existant period' (good way of putting it!). It seems after reading all these replies to be common. Not 'impossible' then, as my gyne so confidently stated! I really felt like a conspiracy theorist when I tried to show him the 'evidence' in my diary! Ha!

Thanks again for sharing your story !!!

X X X X

dixxx5 years ago

Been there hunni , go back and demand a laparoscopy.

tigerlily27 in reply to dixxx5 years ago

im sorry you have been there too! Hope you are getting the help you need now! Xx

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