Advice needed :(

Hey everyone. So to recap I got diagnosed with endo after a lap in October and had the mirena inserted. Worked well for a while but has left me in more pain.

The past couple of months the heavy bleeding has returned with more agony in my stomach, back and left leg.

Tried tranexamic acid, cocodamol and the pill but nothing seems to help. Been to gp out of hours tonight as bleeding got v heavy and was crying from the pain. Been given some tablets to stop the bleeding but these are not a long term option I was told. Was also told I'm too young for the next stage of treatment (I'm 20). So I was wondering what can I do? :( feeling very stuck.

8 Replies

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  • Hi Flare, sorry to hear you are going through such a rough time!

    Have you been referred or under a gynaecologist? You aren't too young for treatment, I'm 22 and have been trying different treatments for a few years.

    I suggested going back to your GP, asking for a referral or re-referral to a gynaecologist, to see if you can maybe have another lap or look for other routes of treatment.

    Hope you feel better soon!

    Hol x

  • As Hol said, you aren't too young for treatment. It is true that younger patients do sometimes need further surgeries (as the disease can develop/become more obvious as we age), but that is no reason not to treat the problem now.

    Do you know if they excised/removed any of the disease during your lap, or was it diagnostic only? As Hol said, it's probably worth going back to your Gp for another referral. it's also worth checking if there is a BSGE specialist centre in your area, as they are generally more skilled, and thanks to Patient Choice (if you are in England) you can request a referral directly to them with your GP.

    bsge.org.uk/ec-BSGE-accredi...

    Regarding the mirena (and other hormone based meds), these options can sometimes help reduce symptoms in some people, but they don't get rid of the endometriosis, and in some cases people continue to have pain and side effects. I've tried mirena 3 times myself, and always ended up getting it removed (after at least 4 months to give it a chance to settle in and after a year at the longest), so unfortunately in some cases these options just don't work as well as we hope. One two occasions it was awful right from the start, and the pain and bleeding never subsided. One one occasion I did get a few good months on it.. but about 7 months in my bleeding and pain really ramped up and I ended up getting it removed after struggling on for a few more months.

    Obviously they do sometimes help, and I have spoken to a few people with endometriosis who think they are brilliant.. but others like me have had issues.. so it's not unheard of, and if you are struggling you have the choice to get it removed.

    Personally the side effects (awful central cramping, bleeding, spotting and general discomfort) stopped almost straight away after removal. Obviously though it's an individual choice, and you may be getting some relief from it, but I just wanted you to know it's not a guaranteed fix, so don't feel you have to stick with it if you are struggling.

  • Hi ladies, I dont currently see a gyne but I have. They discharged me as at the time the mirena had helped with the bleeding but gave me more pain. They told me the next stage of treatment is to supress the ovaries and they weren't willing to do that because they are concerned about it damaging my bones.

    Saw my GP last month and she said if the tranexamic acid didnt help this time round she would refer me back to gyne but unsure if they would do anything or not. Also been told to chase up colorectal docs as I had one appointment with them, was meant to get a letter but it never arrived - awaiting colonoscopy to see if it is in my bowel.

    I did have the endo in my pelvis excised. Not sure if they got it all? Unsure on the rate it grows and spreads. This is all really new and confusing.

    And thank you both for your responses, hope you are both well,

    Lauren x

  • And the closest centre to me is 90 mins away and i dont drive :(

  • Hi

    You have been incorrectly advised by your GP. The reference to 'the next stage of treatment' means specialist hormone medications often referred to as the menopause injections and you are too young for that as they can affect bone density and yours won't have reached maximum levels yet. But she is incorrect in saying this is the next stage of treatment implying that it is the only one on offer. It is an option but only if the patient wants it. These medications are very controversial and there is little evidence that they have any lasting benefit on the progression of endo and especially not in the case of well established disease.

    I note that you have left leg pain. This can suggest endo in a place called the Pouch of Douglas hidden behind the uterus and this is often missed in general gynaecology because it is by the bowel and is an area that needs specialist attention - that is, a specialist in endo rather than general gynaecology.

    You are young enough to take control of your treatment and ensure you are seen by the proper people from now on. Please click on my name and look at my post on POD endo to see what you identify with and the one on how to get to a specialist centre. It sounds very much like you have endo that has been missed. Below is the link to the NHS guidelines on how you should be treated which confirms that the medication referred to by your GP is just an option. The other is referral to a gynaecologist for surgery. If he/she says you have already had that option you need to stress that you were seen in general gynaecology and you now want to be seen by a specialist in the condition since your symptoms are continuing. Look at the links in my post as to your rights to a second opinion. Please feel free to pm me if you have trouble getting a referral. x

    cks.nice.org.uk/endometrios...

  • Lindie that was a great link you have you have put up about the treatment options big thumbs up for that as have find this information very helpful thanks so much and one on endo in pod is very intresting as well xx

  • Its so messed up and confusing. First they tell me they can do no more for me, seen my doctor this morning, put a referral back in for gyne and says the injections are now an option. So frustrating. Not sure what to do. Unsure of side effects and so on? Aside from the bone density.

    I have read your post on POD and I see what you mean about it sounding like that. Could this be found in a colonoscopy? Due for one but not keen on another lap or surgery tbh as my mum had lots of ops - she had endo till having a hysterectomy and the amount of times they went in and burnt it away and so on, has left her with scar tissue and still suffers pain now.

    Thank you for your response. X

  • A colonoscopy is likely to only show endo if it has actually penetrated your bowel and let's hope that isn't the case. But since this will be being done in gastroenterology rather than in an endo centre they will probably just say it is IBS if your bowel is clear - a condition associated with endo but not an alternative diagnosis. This is the most common misdiagnosis for endo.

    At 20 you absolutely should not be offered the injections as a treatment rather than thorough surgery as, quite apart from the bone density issue, you can only take them short term so at your age they would have no long term benefit at all if your endo is deep in the POD and just put other aspects of your health at risk. The centres have been put in place exactly for girls like you to avoid you being in the position your mum is in with lots of scar tissue from ineffective and obtrusive surgeries. The specialists operate in a way to minimise scar tissue. If your mum has pain still after a hysterectomy this indicates that she has not had her endo completely removed and it can continue after a hysterectomy. She may well benefit from referral to a centre too. Women travel all over the country to get the right treatment.

    So many women are coming on here in their late 20's and early 30's with terrible severe endo that is hard to treat, even surgically, and would give anything to be able to go back and get the proper treatment now available when they had chance. This is almost always due to neglected POD endo. I strongly recommend that you look at referral to a specialist centre but ultimately it is your decision. x

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