Do i have endo? Please any help appreciated

Hi to everyone who reads this.. Im 28 yrs old with 2 young children, i had no problems concieving with either children. Iv had very heavy painful periods from the day i started them on my 16 birthday. But since the birth of my son whos now almost 4 (c-section) iv had irregular extremely painful heavy periods that worsen everytime i have one. They last from 7-11 days and competely wipe me out.. I have pressure down below so bad on periods that my uterus feels like its going to fall out. Iv had problems with my bowels and constant need to urinate-often going 6-10 times at nite! Bowels only get bad when im on period. Last 8-9 months iv been to doctors and a'n'e at least 5 times a month with the pain. Iv passed out with the pain and have nite sweats. All the doctors iv met just put me on really strong painkillers so that im constantly tired or confusd. Sex hurts and i spot after. My second opoinion gyne thinks its endo and suggested a hysterectomy.. Was taken back by this as i thought thered be routes or other things i could try first. She wants me to have a zoladex shot first tho? Other things i have tried are pills,coil,implant and tired and stressed. If any one could help in telling me about zoladex shot or if theres any other options i could mention to my gyne id really appreciate it. Thankyou x

7 Replies

  • It does unfortunately sound like Endo, however, a Hysterectomy is very drastic and not always a cure. I have just started on Zoladex, an implant injected into your tummy, that slowly releases hormones over a 1 month, 3 month, 6 month period (if you have it I would recommend a 1 month to begin with, in case for some reason it doesn't agree with you, then you don't have to wait too long for it to wear off). It puts your body into a chemical menopause, slowly diminishing the amount of Oestrogen (which feeds Endo) your body produces and shuts your ovaries down. This is not a permanent thing, just temporary, so you could have more children later on. As with all meds, there are possible side effects, such as hot flushes, loss of libido, vaginal dryness, but, if taken with HRT such as Livial (Tibilone) these can be minimised. This is not a long term answer though, it can lead to thinning of the bones, and often used to determine if stopping feeding the Endo with Oestrogen is effective. The only real definitive way of diagnosing Endo is by Laparoscopy, minimally invasive surgery where a small camera is inserted through your tummy button. Please do as much research as possible on Endo and Zoladex to set your mind at rest and to be armed with info that your doctor and some Consultants don't even know.

    If at all possible search for an Endometriosis Specialist rather than just a general Gynaecologist.

    PS I have not had any dire effects after one month of Zoladex, just the hot flushes which I was getting anyway as I was peri-menopausal (already starting to go through the change). But, of course, it is different for everyone, as is Endo itself, no two women will suffer the same, have the same pain, times of pain, react the same to meds, so definitely find out as much as you can. xx

    a good place to start:

  • Thankyou for ur help x it does appear that the doctors and gynes i have seen are keen to either pass me off with the strongest painkillers they can think of or as soon as i mention iv had children and dont want anymore they just fob me off and get me out of their office quickly. My gp has been very helpful even he is shocked not one doctor has offered a lap to diagnose... I understand a'n'e are very busy but sometimes i just dont know what to do when the pain is so servere and i pass out. All very fustrating. Thanks again. I will look into arming myself with as much info as poss from the link u have given me. X

  • Agree with Amb on everything :)

    I found the Endo for Dummies book useful for explainin treatment (or lack of treatment) options. Also, lots of ladies get long term relief after a treatment lap (excision) , and the other thing that cuts nerves to the uterus (which I can't remember the name of cos it's been a lonooonnnnnng Monday!)

    Good luck honey, it's a tough fight x

  • Thanks amb and cloudyrain. Have u ladies had a lap and who suggested it? Sorry for so many questions.. I will look for that book. I guess after years of trying everything docs have suggested and the pain getting progressively worse i actually want them to go in and have a look so to speak. X

  • I was the same, I always had awful periods, always had pain with bowels especially when on my period, only conceived in march which is a little weird, pills never worked would just bleed right through, mirena coil did nothing and fell out during a heavy period on holiday and this year I had a hysterectomy and that is when I was diagnosed with stage four endo and Pcos! it has given me a whole new lease of life. I still have pain sometimes and there are problems with my bladder (had subtotal hysterectomy as my cervix was fused to bladder) but not to be ruled by bleeding is amazing, I'm now not anemic any more which is lovely. I'm 35 so a little older. I would say give everything a go first, hysterectomy is the last resort and doesn't always stop pain but as a positive the periods stop

    Good luck xx

  • Hi jubro.. Thanks for ur reply. Im now on decepapetyl , which is the worst thing i ever done. I feel so poorly. I would not wish this on anyone. I think it will end in a hysterectomy cos i cant put my body threw anymore pills or injection or hours sat in a'n'e feeling like giving up. claire xx

  • Hi I had the same I was in and out of a n e every week in crippling pain they removed my appendix thinking that was the prob but pAin was still horrendous after 2 months of literally being in a n e every other day they did a lap but I had to push like mad or this it turned out to be endo they burnt it away however it didn't stop there they fob u off with loads of pain killers and wash there hands of you. I in total spent 3 months in hospital most of the time on morphine for the pain I had 2 more laps a few months down the line they burnt away endo but yet again that was it after the op they washed here hands of me. It's now been going on for 6 years I am 26 1/2 and have 3 children the las 2 born after endometriosis was a problem and coincidently both pen very prem 11 weeks and 10 weeks early. The last our daughter born 4/4/13 previous to her I was booked into have a hysterectomy as I was told I wouldn't be able to conceive again. I am now back to square one horrific pain constant heavy bleeding etc so I will be pushing for the hysterectomy to be done ASAP. I can't understand why they haven't offered you a lap that is the first thing they should have done. Push push push for it don't take no for an answer! Good luck with everything Hun xxx Lisa xxx

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