Getting past this

I posted a few week ago, now I have had finally the acknowledgement I was not wasting time or a bed. (Was told this during my admittance). I was referred elsewhere, where more tears were done including smear, analysis etc. I went in for my laparoscopy last Monday. Went into theatre pained and scared that was it all in my mind like I've also been previously told and wasting time. Coming round I was told it was severe endometrisos, they has found small deposits leading to adhesions.

Nearly a week on and I feel like a new me, no pain as such little bit around my right side, which was where I had most the pain, then got a little infection in one of my wounds.

What I'm saying is trust your body.

Now just a quick question for some, the consultant has induced an early menopauE for using hormone tablets and the injection. The injection I can only be on for 6 months (this being my second) what happens when it reaches the end of that period, so I stay on HRT? I know without the endometrisos will surely come back, a hysterectomy is out the question purely for my age. I have one daughter so I'm lucky in that respect but our quality of life this year has been 0 down toy condition. She has been like a carer finding me collaspes from pain and blood loss at top of stairs to helping me hold my hair being sick. It is I that should be the one looking after her, not the other way around. Please if anyone can shed light or experience in preventing the condition returning. I would love to get in contact.


Stephanie, 23

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10 Replies

  • Hi marr -steph

    It is such a relief isn't it after 29 years ( I first had my period at 11) I'm 40 years old now and it wasn't until the endo was growing on my incisiol scar that they helped my. They have made me feel like I was crazy. women docters just told me this normal and I just just get on with it. I've been admitted onto the ward and because the docter did a pelvic exam and blood test and to them seemed fine........ The nurses refused me pain relief so for years I've sucked it up and felt so alone. I had my ultra sound and vaginal scan and not only do I have a mass on scar but they picked up endo in several places my womb. In the room was a lady who had lived with endo for years and the man who did the scan had just done been to a talk with all the head consultants about endo. They took the time to listen he asked me loads of qustions he believed me. I broke down right there and then I was so relieved there was something wrong with me they treated me with respect. understanding, I came out of there and every been I had been going through all these years suddenly made sense. Most of all I was not a drama queen I was not imagining it and I'm not crazy. I have my first lap in 8 days I'm scared but now reading your post I'm hoping I too come out feeling like a different women. I'm sorry I can not give you advice on the next bit of your journey because I don't know, but I just wanted you to know, that I truly do hear what your saying about being made to feel like a time waster and it's cruel. I was a child when all said and done who had something so painful but they left me to suffer even back then it affected my behaviour my relationships the way felt about myself. And by the time I was older I had no trust left for the docters until now. And I know things are not perfect for the younger girls or for many women but at least the docters are getting more aware of endo now there's still along way to go but at least someone believed me. So much love and respect to you and every women that suffers ( because it is suffering) with endo each and every day like the man said who did my ultra sound it is an awful decease it has more symtoms of cancer but it's benign kx

  • It's awful, my partner is currently studying biomedicine and has strangely been working on inferrility and endometrisos. He never realised how painful it was. I'm hoping to do something for fundraising to increase knowledge not only to other women but medical profession. Like u say there is a long way to go. The fact they can make you judge and doubt yourself is wrong. When you see a doctor or go to hospital you should have faith not be worried bout not being believed.

    Feel free sweet to add me on facebook and Pm me.

    Good luck with the op, honestly I came out able to get out my bed havwnt managed that in years without being in pain. Only bit of pain and irritation is my incisions atm. I am in awe to be honest, I feel so physically well I could do do anything marathon even a full shop at asda! but then reality hits it's not been long lol.

    Thinking of you Nd sending hugs xx

  • If you're endo has been diagnosed as severe, Prostap and similar injections will not help, if you are lucky it may temporarily mask your symptoms, but the only treatment that works is to get a true specialist to excise the endo. Our member Lindle has alist on her feed of recognised consultants who specialise in treating us.....especially at stage 3/4, so that it won't return. Xx

  • Oh p.s. I found the injections plus HRT made me sooo sick, it's horrible, I really feel for you. It took 18 years to get my endo treated and 30 YEARS to diagnose IC......I can't tell you how many doctors I've seen over the years, or the antidepressants I was prescribed because I was so depressed ( hardly surprising) The relief that you're not going mad is immense. Good luck Hun x

  • They have put me on zoladex and something beginning with t, for the HRT. The consultant said he had removed hopefully all the affected tissue and unfortunately more was done than expected due to see him soon to go over the procedure in detail and look at pictures. It's horrible wish more things were in place to help and support women living with this condition x

  • Hi, I'm sorry to hear of your experience.

    Do you know whether your gynaecologist is an endo specialist or just a general gynaecologist?

    Unfortunately endo is complex and comes in different forms meaning a general gynaecologist more than likely lacks the experience and skill to (a) recognise endo in all its forms and (b) surgically excise it (ie cut it out). General gynaecologists' interests lay in the reproductive organs but endo unfortunately can effect other areas too such us the bowel, bladder, the peritoneal lining and, although rare, even the kidneys, lungs and brain. Therefore if the surgeon fails to recognise the endo and thoroughly excise it women are likely to continue to experience symptoms.

    Given endo is a complex disease specialist accredited endo centres have been set up nationwide which have a specialist teams consisting of endo gynaecologists, colorectal surgeons, urologists and pain management specialists. If a person is suspected of having or has formally be diagnosed as having severe endo they have the right to be referred to a centre of their choice. A list of these centres can be found at the following website by clicking on the tab "Endometriosis Centres" and then "BSGE Accredited Centres":

    Unfortunately it is possible your GP and even gynaecologist has not heard of these centres - my GP hadn't until recently when I printed off the list and gave it to her! Please bear in mind most are NHS but I know of at least one that is private only (Elland Spire Hospital) so if you are referred to one unless you have the funds or private health insurance ensure they are an NHS accredited centre.

    With regards to treatment options unfortunately there is currently no cure for endo and this includes hysterectomy - it is not a cure for endo.

    Unfortunately I know from personal experience and from reading others' posts on this forum that the myths still exist ranging from "its normal, deal with it" to "a hysterectomy cures endo" or "getting pregnant cures endo".

    The reason why hysterectomy rarely cures endo is that endo may be on other non-reproductive parts of the body such as those mentioned above meaning if this isn't thoroughly removed it is likely symptoms will continue to exist as the endo is still there.

    Furthermore it is believed oestrogen plays a role in endo and even after hysterectomy with oophorectomy (ie ovaries removed) your body continues to excrete some oestrogen. If you'd like to know more about this a woman on this forum called Lindle has posted on here regarding this subject quite recently so search and you will find this.

    Additional little is still known about endo and whilst oestrogen does appear to play a role other mechanisms seem to also possibly be responsible. There is even research now to suggest endo may be an autoimmune disease.

    Furthermore, as you know yourself pregnancy also is no guarantee of a cure either, although there are some reported cases of symptoms either reducing or being eradicated entirely during and even after pregnancy. However, in the main symptoms are merely dampened down during pregnancy only to return afterwards.

    The gold standard of surgical treatment is excision surgery (ie cutting it out) as opposed to burning it off with a laser (though please bear in mind some surgeons use the laser to cut with too). Burning endo is less effective as it tends to just remove the top rather then remove it from the root meaning, much like a weed, it is more likely to grow back. Do you know how your endo was removed?

    Unfortunately as there is no cure even with good excision surgery endo can, though not always, grow back and it's often said this is after approx. 5 years.

    Unfortunately it is really important that women reduce the number of surgeries they have in their lifetime as apart from the usual risks associated with any surgery, with abdominal surgery there is the risk of scar tissue and adhesions forming which can cause pain and other issues in themselves.

    Therefore trying hormone based treatments such as the pill, the coil or zoladex when the disease is in its less advanced stages is not necessarily a bad thing provided a woman's condition is monitored and symptoms managed. However in more advanced stages of the disease these types of treatment are less beneficial and either way such treatment does not shrink endo. At best it dampens down symptoms which often return when treatment inevitably stops.

    As endo is regarded as being oestrogen driven woman can also help themselves by following the endo diet as strictly as possible. I found that following this combined with daily exercise and reducing my stress levels where possible reduced my symptoms to a more manageable level for a good number of years before requiring treatment again. If you search the Internet or even this website you will find more information on the endo diet.

    I hope this helps and I wish you all the best, x

  • Thankyou it does, as far as I know it was removed, during the op. I'm on zoladex but can only be on that for another four months. Also on something else beginning with T, which is oral HRT. Am just worrying as you say it will come back. X

  • Hi Stephanie, the important things are that your symptoms are under control now and that if in the future they return you now know you can be referred to an accredited endo centre for more specialised treatment.

    I know it can be a worry but I see it as we unfortunately have a life long condition that needs managing and monitoring and we have to play an active role in our treatment plans for at least this is an area we can have some control over.

    Fingers crossed this horrid disease will get the attention it deserves someday and either a cure will be found or better treatment options will be made available, Jo x

  • So the injection you are on is a gnrh analogue prostap or zolodex? Hrt is given to counteract the side effects such as bone density loss and night sweats etc that come from menopause. You need to keep taking hrt for the duration of your gnrh course and they should exoklain this when injecting you.

    I also have severe endo and like you, am annoyed its turned my kids into carers. Everyone a0ears to get a different experience with endo, I am about to have my seventh lap in 15 years as mine is aggressive and I have other complications. Post lap I normally feel so much better.

  • Hi Hun, so sorry I didn't realise you'd had it removed - quick question tho - why have you been recommended to have injections and HRT if the endo has gone?

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