Little help please

Hi all,

This is my first post on here and if this has already been answered please point me in the right direction, I have stage 4 endo, 3 ops and waiting for 4th now. A few months ago i developed some new symptoms that ive never had before. Ive been to the drs who have done swabs and said there is no infection. Symptoms are painful intercourse like a tearing/burning sensation that brings tears to my eyes, some intimate itching, and increased d/charge (tmi) i have been on prostap injection and currently using estregeon add back pessarie which my consultant said should help but doesnt seem to be! Just wondered if anyone else had same/similar issues and if they found any solutions to it.

Thanks in advance x

9 Replies

oldestnewest
  • Im new to this community but not endo. Had been thankfully relatively free of syptoms for a few years. But back with a last flurry it seems. I too have always had varying degrees of painduring intercourse. I also have been treated for thrush regularly during flareups ~ so maybe get yourself tested for thrush? Not sure why it is the case but the two seem to go hand in hand with me.

  • Hi Caz89 I too have stage 4 Endo like yourself. It is imperative because of the complexity of this stage that you are treated in a BSGE centre bsge.org.uk. It is common for general gynaes to miss Endo during a laparoscopy and can be, along with using ablation the reason so many women need surgery after surgery. Take a look at their website and see where your nearest centre is. You can be referred on by your gp or gynae. With your symptoms of painful intercourse it is likely you have an obliterated pouch of douglas which in turn can mean involvement with your bladder or bowel or both for some very unlucky women! Has your surgeon told you where your endo was found? It is my understanding the gnrh agonists like prostap are a futile treatment at this stage. The gold standard of treatment is excision.

    I know the prostap can cause vaginal dryness-joy! as if we haven't got enough to be dealing with! I don't know about anything that can help with the itching but I am sure someone will have some advice for you.

    Feel free to message me x

  • Hi,

    Thank you for the link to the BSGE, it has fallen lucky that the consultant i am under it the one accredited on their website. I have been told previously that my pouch of douglas is infact full with adehisions but never knew this could cause the pain on intercourse so thank you for that. The main goal they have at the minute is getting me at a stage where they can successfully perform IVF as i want a family and this is the only way for me. I do believe the long term action is to eventually have a 'good clearout' so to speak.

    Its just the little things along the way that like to kick you in the teeth! X

  • Dont they just!! That is great you are in good hands. I dont think it occurs to the doctors to explain the correlation between where the endo is and our symptoms. For me I have to know so as to try and make sense of it all and it definately helps so you know why certain pain is happening, if that makes sense?! If you have it on your utero sacrel ligaments this can cause difficulty turning over in bed, standing, sitting for long periods,which for me is exceptionally painful and the reason for awful sleep.Also if you suffer sciatic pain this is reffered pain from the nodules inpingeing on the nerve....if i think of any others i'll let you know. I wish you well with the ivf Caz. So many women on here go on to have children despite having to battle the god awful symptoms!!! Let us know how it all goes x

  • Painful sex is a common symptom of endo but would usually be expected with stage 4. As has been mentioned prostap is unlikely to have an effect on this as it is likely caused by nodules of endo and/or adhesions that are not caused by oestrogen and so not improved by its withdrawal.

    However, evidence indicates that these medications may help improve live birth rates after IVF whereas the evidence for prior surgery is not conclusive. Have a look at pages 70 - 73 of the relevant guidelines.

    file:///C:/Users/linda/Downloads/ESHRE%20guideline%20on%20endometriosis%202013%20(3).pdf

    You might also be interested in my posts on rectovaginal endo and endo on the uterosacral ligaments.

  • Thanks Lindle, can these symptoms occur later then diagnosis i have endo for 4+ years now but only in april did this symptom occur.

  • Yes, because the endo can still be progressing. Dense adhesions do reach a stage where they become as tight as they are likely to and deep endo that is in the form of nodules does reach a point where it ceases to progress but there is no way of knowing what stage you are at in all of that. Are you having IVF prior to surgery because of age? Whilst the evidence doesn't show that excision and adhesiolysis improves IVF chances it is done to relieve pain in cases like yours. If you are successful you should be aware that you might have pain with pregnancy as your uterus swells and might need a c section as your cervix will be bound up in all the adhesions. Is time against you in considering surgery first?

  • I'm having surgery prior to IVF, i had surgery christmas 2015 with a hope to start IVF early 2016 however when they did some more scans it was deemed to high risk to start due to another cyst forming and a blocked fallopian tube. I have since been back to my consultant at castle hill who has said that another keyhole procedure will be done to remove the cyst and any scarring necessary and also the blocked tube as this is what is causing the higher risks to proceed with the IVF. Im hoping surgery will be soon to start IVF again in early 2017. Time has always been against me as i was told there would be a good chance i would need a hysterectomy by the time im 30, im 27 now. Consultant has said i also have endo on my bowels, and other areas but he doesnt want to address this just yet as the risk involved with doing these procedures is much greater. His main goal is to get my insides ready for the IVF to be successful, both my endo consultants and IVF consultant have said at this stage the best thing for me is to be pregnant to reduce the endo progression.

  • Just be sure they aren't suggesting a hysterectomy and removal of the ovaries instead of excision of your endo as this isn't an appropriate treatment. If having your ovaries removed you will still need to have complex endo excision at the same time as you will need to take HRT and this can just keep feeding any endo left in. Good luck with the IVF.

You may also like...