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Endometriosis UK
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Really need advice please

After years of pain/heaving bleeding, no results from internal scans and smears the doctors are referring me to a gynaecologist with suspected endometriosis.

Until I get the letter of referral in the post the doctor has prescribed me tranexamic acid and advised me to look into the IUD or contraceptive injection (I’m already on microgygnon and has no effect).

I was hoping people could share their experiences on tranexamic acid and if they opted for an IUD or injection. I’m really put off an IUD regarding further pelvic pain and unnecessary bleeding but the injection requires regularly doctors visits and the side effects people are talking about has made me hesitant.

I am currently at university doing my masters and have a lot of work and exams to do and really don’t want to change to something which is really going to affect me during this time.

ALSO

How long did you have to wait for a referral? What does the gynaecologist do that differs from the GP investigations?

Thank you! :)

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Hi this is the first post I seen having just joined up 5 minutes ago! Whilst I've not got any information to share about medication. I can tell you that I, myself have been referred to see a Gynacologist for suspected endometriosis. The doctor who referred me explained that as standard it takes 3 to 6 months. In the meantime, after 2 months had passed, I was still in agony with my periods and other issues so decided to seek private help from a private Gynacologist. This consultation was £155 and as he has recommended a laparoscopy, this has been used to get my GP to expedite my referral (it's over 3.5k privately which I really cannot afford). So hopefully this means that an appointment will be on its way to me (although another month has gone by and there doesn't appear to be much movement with a quicker referral!) I know there are more urgent cases though and I am patient with it - the private appointment was more for peace of mind, that it wasn't all typical period issues. I know I've not given much, but I hope the info helps. I'm 26, have every sign and symptom for endo and have done over the years. I can't take contraceptive pills to help at the moment because we have been trying to conceive now for almost 2 years.. another reason for investigations my end. I really hope your referral comes quickly for you xx

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Thank you so much for your reply. I will definitely keep in mind about a private consultation if the wait is really long and it gets truly unbearable. I have another 7 months left of my masters and concerned it’s really going to affect me. What do they do in the consultation? I just don’t know what other things they can do when I have already had internal examinations, smears and internal scans. Xx

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No problem at all :) if the pain becomes unbearable, firstly go back to your GP and they may expedite you without you having to pay privately - I decided on the private route even though my GP said to come back to her to expedite, just because I was in agony with no tablets touching the pain. The doctor did prescribe me codeine which did help ease things but it wasnt guaranteed - I was almost having to come home from work every month along with the fact that I had every other fertility test done, it was all pointing to endo on my side. During the consultation, the consultant really listened. I went prepared so all symptoms were wrote down, we talked about past and present history. He then asked if I would be happy for him to do an internal examination and I shared with him all of the prior tests that I'd had. He felt that all the signs were pointing towards endo and recommended a laparoscopy as soon as possible (which I've sent off to the GP to expedite my referral with the additional hope that with a previous specialist having seen me, it'll be a straight forward referral to a laparoscopy). The only way to be confidently diagnosed with endo is for that surgery to take place! They can then (depending on how bad the situation is ofcourse) potentially do treatment at the same time - from what I've read online and seen on YouTube videos it's basically burning away the endo from the tissue lining. This can help ease the pain but there's no guarantee that it won't come back -or so I believe! What joy it is to be a lady hey lol xx

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My friend had this procedure done and was some years later able to conceive a baby naturally. She had sadly 2 miscarriages before that and IVF didn’t work for her. She is also in her 40s but believes that the endo was the main issue making conception a struggle...

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I went for years with undiagnosed endo. The GP thought it was GYN....the GYN thought it was gastric or bowels.....it took a lot of ultrasounds, mri’s, cat scans, colonoscopy and endoscopy before they did the laparoscopy. Even after the lap and the removal of a bunch of cysts, adhesions and endometriosis, I was still in pain. I had an IUD put it and it made a huge positive difference. So don’t rule it out. I know there is a lot of negative about them. It wasn’t pleasant to have it inserted....but it was over quick. I had a bit of cramping the first few days and sore breasts for the first couple of months but nothing else. I don’t bleed anymore and the general pelvic pain is reduced by about 50 percent

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Hi, I waited 3 months ish for first referral, was given mini pill to try for 6 mth which didn’t work, then another 2 months to get back in, where a laparoscopy was agreed. I wanted to change to an endo specialist as at this point I had no faith in my general gyne then waited to see him, another 3 months, who agreed laparoscopy an I wa put on his waiting list for over 4 months. It is a waiting game 🤦🏼‍♀️ I had positive experience of tranexamic acid helping reduce some bleeding (and I was heavy to the point of flooding through tampon, towel and began to wear Tena incontinence pants) then I had the mirena in and it stopped my periods completely which is a help, but not the pain. Joining this forum was better than any of that though, the support you get here is priceless. Good luck x

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Hello

I’ve been bleed/heavily for over a year and my gp referred me to gynaecologist which was really quick and she did all the test on the first day to rule out anything and told me get on the coil with I was unsure as it still didn’t stop my bleeding so she got me referred to hysteroscopy place and the gp couldn’t referred me there but gynaecologist could and they got me a injection depot only one injection and that has stop my period after a long one year wait it finally stop

Hope it get sorted for you

Ps I had no side effect from any of these stuff I mention except for depo injection hot flush

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Hi Oncmed,

You must be at your wits end suffering with everything, never mind the added stress of of being at such a crucial point in a long educational journey.

I understand what it can be like to suffer and not feel like you are getting anywhere. In my journey, so far, I went through initial investigations with my gp which included ruling out other possible causes. Luckily my gp has listened to the pain I am in and through trial and error I am now, for the last year or so, taking Mefenamic Acid and Tramadol which, when combined with heat treatment makes an impact even if it doesn't 100% always conquer it.

When I saw my local gynaecology team they were unhelpful and it was a waste of 18 months, to be honest. Next my gp referred me to an out of area gynaecologist who specialises in endo. It took about 8 months to get in and initial investigations moved quickly for 2 months, including a hysteroscopy. Then everything stalled with a response to results taking 3-4 months advising me to await a follow up appointment to discuss. So the long and the short of my experience has been it is a long journey. It is better to start it and if you choose to delay a form of treatment by your own choice, along the way, it is better to have that option than to be waiting for a choice. Also don't let someone tell you there is only one option - there are different paths that vary in results between individuals and it is important that your gynaecologist listens and discusses them with you (which the new team did for me). I opted against a coil due to several personal reasons, including other health conditions and family history, but that doesn't mean it is not a good choice for you. The main things are that you feel you are moving towards a solution, feel you are being listened to and are given the ability to make informed choices about you and your health since it is different for everyone.

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Thank you for your reply.

Yeah I’m sick to death now. Was in crippling pain at 4am when I had an exam at 9am yesterday. With no ‘definitive’ diagnosis and not being referred yet I’m 100% sure the university will not be interested in giving me any support over what they perceive as ‘a bad period’. Doesn’t help that all the top people for my course are men...

Luckily the local gynaecologist where I am at specialises in endo 🙏🏻

Heat really does help, I do have tramadol in a drawer somewhere from a previous emergency visit to the hospital - I’ll have to ask if I would be able to use this when the pain is so bad and happens at such an inconvenient time. I was crouched over my exam desk still in aching discomfort despite taking codeine.

I’m really not interested in a coil or the injection. Both have issues which I’m really not prepared to take at an important time right now. So I’ll have to stick to painkillers my normal pill and tranexamic acid.

This forum has been so good and put my mind at rest knowing there are plenty of other people going through the same thing!

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I wouldn't advise a woman with endo to take tranexamic acid as it is an anti-fibrinolytic drug, which can lead to cysts and adhesions in the long term.

If you want to reduce the bleeding, favouring clotting with this drug isn't the best option.

The best option is to take a progesterone-only drug, preferably with dienogest or norethisterone acetate as progesterone because they are very effective on endo and will stop its growth. I highly encourage you to go to a specialised gynecologist (not just any gynecologist) telling them endo is suspected and preferably look into laparoscopy with them as well. I am going to repeat this to make sure it sinks in: only a specialised doctor at a specialised center can help you in the best way possible. Normal gynecologists will not help you in the best way because they probably don't know how.

Please, I'm begging you, seek specialised help

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I've been waiting since August...I've been told the specalist they want me to see has a 58 week wait list for new urgent referals. So I'll have been waiting well over a year. I'm on TXA and a progesterone pill and at the moment its a decent enough stop gap. It's changed my periods frmo 15 day on the floor howling episodes to 5 day...kinda alright, buts till painful. It's enough to get me through the wait to see someone but it's no cure and not a long term option.

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I recently went on an online chat with a nurse (through Endometriosis UK) and she said that you can ask to be referred to a specialist Endo clinic, which she advised doing.

Before that I had a coil fitted and it definitely improved the level of bleeding and the pain. It did make me have a light period for months until it settled down eventually, but that was better than the awful periods before. I was contemplating a hysterectomy before, but I can live with the coil and I hope I don’t have to get more drastic!

Good luck!

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I have just finished my Master and truly understand your concern. The tranexamic acid really helped me reduce my menstrual flow. I took Ibuprofen and codeine from Boots to ease the pain, especially during exams.

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Thank you. The staff on my masters course have treat me really badly and in the process of filing a formal complaints procedure. This on top of it is making me feel so ill. I’m really having to push myself to finish the next 6 months.

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