what treatment have you had for your endo??

[sam87]

I was wondering what treatment ppl have had and how it has affected them as i have had my first lot of prostap treatment. but not sure whats next !!!

[_Megan_]

I've had laparoscopy, the oral pill, and the Mirena coil. In my case, the endo grew back too fast for laparoscopy to be useful (almost immediately in fact) but it can last up to 5 years. The oral pill was very effective but is too high a dose of progesterone for me (I'm progesterone intolerant). The much lower dose of the Mirena coil works very well for me. I take a break from it (about 3-4 months after about 9 months of having it in) and with that balance, I'm staying largely symptom-free. HURRAH!

Here's a quick rundown of the main categories of treatment:

Hormones

• The oral pill: This can be progestogen-only or combined. Upside: it’s easily available, not invasive, and also a contraceptive. Downside: a problem if you’re trying to get pregnant, and some women are progestogen-intolerant.

• The Mirena coil: A much lower dose of progestogen, put where you need it instead of dosing your whole system. Upside: lesser side effects, lasts 5 years, also a contraceptive. Downside: also won’t let you get pregnant, and can still cause progestogen-intolerance side effects (which wasn’t known until recently).

• GnRH: Artificially induces menopause, which reverses when you stop. Upside: it’s reversible. Downside: assorted side effects including hot flushes, you have to take HRT, and it’s only licensed for 6 months’ use.

• Danazol and gestrinone: two testosterone-based hormones, rarely used now due to bad side effects.

Surgery

• Laparoscopy: alongside the camera, the surgeon can cauterise or laser away the endometrium, plus cut away any adhesions and cysts. Upside: no hormones, can last up to 5 years. Downside: you need a week or two’s recovery, and it does grow back in time, quicker for some than others.

• Hysterectomy: usually a last resort, or for those who aren’t planning children. Upside: it’s permanent. Downside: it works best if the ovaries go too, which triggers permanent menopause.

[hyponp]

Since my diagnosis at 19 I have had at least 4 or 5 laproscopies, Danazol, and have been on Cilest and other Pills throughout. I turn 40 next year and worry that I may not be able to have kids so I am hoping that my doctor will be able to take me off the Pill soon but there is the risk of it coming back as I had had a laproscopy only last year after a nasty few months of pain and nausea before they realised what was going on even thou i knew that my endo had risen its ugly head again. Changing my diet to wheat and gluten free is worth looking at too. I have just responded to a post on that with some info which may help you.

[sam87]

thank you for your replie. Im 24 an found out in March this year that i havery stage 4 endo. i had a lap in March but it ended in a diagnostic as my surge would not go through wiv it due to the severity of my condition. at the moment Im on prostate sr but Im on my last month . i won't take any contraceptive pills as they don't do anything for me and i want to try for children as soon as i can . so i just don't no what is next for me really. its gd to hear what others have been taking etc as it gives me an idea of what route to try next. have u had surgery to help your endo or as it all been managed through drugs??. thank u again for sharing your treatment with me xx

[pixielott1978]

Hi So far I have had, the mirena twice, zoladex, depo provera and synarel. I have had 4 lap's so far and I am due to have a bilateral salpingo oopherectomy next month. I am hoping that this will be the end to my 22 years of suffering.

[GingerJue]

Hi there in the last 18 yrs ive had the mirena, the pill, zoladex countless times, the baloon ablation and a full hysterectomy. I am 38 yrs old. I have just had my fifth laparoscapy to remove adhesions that had "glued me together" said the Gyne and oh he happend to find some falopian tubes in there that should have been removed !! Great stuff. Living with endo has been challenging to say the least and i'm glad to find others out there that understand the pain x

[84Rach]

I was on the pill from 17 and I think it suppressed my symptoms, but as I got older my periods got heavier than they were before the pill, so I just stopped taking it when I was 23 cos it was giving me headaches and affecting my mood. Then my health nosedived and I started getting worse and worse periods with pain and ovulation pain.

Mentioned endometriosis to a doctor in A&E when I was in resus with a severe throat infection that was almost sepsis (when the infection gets really bad) but he just said to talk to my GP. I kept trying to get a Gynae referral by telling my doctors how bad my periods were, but they didn't take the hint.

Went on the pill again when I was 25 and stopped after about 2 weeks because I couldn't cope with the headaches I think I'm oestrogen intolerant!).

Finally got a referral to Gynae by asking straight out and not dropping hints! They refused to give me a laparoscopy and said it was "dysfunctional uterine bleeding" - you don't say!!!

Then I had the Mirena. In some ways Mirena was good but in other ways it was awful and caused all kinds of different pain and constant bleeding (I've come to the conclusion that if you haven't had kids then Mirena's more likely to not agree with you).

I got referred to Gynae again, different consultant and he agreed to the lap straight away, so I had that done and they found spots of Endo. I had them removed by Helica and then started Prostap (GnRH). I loved Prostap, it gave me my energy back and I loved not having periods and little pain. But my consultant wouldn't give it longer than 6 months.

Today I started Cerazette (progestogen only pill) and will probably have the contraceptive (progestogen) implant in about 3 months.

Hope it works! Hope you ladies find some relief. x

[stevieflp]

Sam Hi,

I feel for you. I had Stage 4 endo - bladder, on bowel, ovaries, pouch of douglas, diaphragm. My innards were not in the right place through being stuck up.

I was given what I considered not to be the best advice from my first consultant who was a general gynae advertising as treating endo, who said I was a complete mess with no hope but to have hysterectomy and oophrectomy - and due to my age, HRT.

That just did not sit peacefully with me or seem rational upon research. I rejected hysterectomy and oophrectomy because the surgeon did not suggest any excision of endo in other areas so it would still remain. I might have considered it had my endo not been in other areas also. I really could not rationalise the advantage, why not keep my own hormones then and not go through that - I would ultimately be in the same position wouldn't I, maybe with a little less endo for a time with just less organs to cover. Hormone replacement would have kept feeding it though.

I went through hell trying to find what I considered to be an alternative. I was lucky to have a supportive GP.

Following considerable research, I opted for radical excision surgery as this removes the whole lining of the peritoneum - seen and unseen endo and heals cleanly with far less chance of adhesions forming (and with temporary ovarian suspension to prevent ovaries sticking following removal of endometriomas). The surgeon has put everythng back where it belongs as far as possible.

I thus avoided a hysterectomy and oophrectomy with this and did not take any synthetic hormone treatment or go into enforced menopause.

It was the most lengthy surgery (8 hours), all done keyhole, but I have no doubt it was my best option. I am now a year on from radical excision and have been completely back to normal. Hardly a twinge and completely normal periods.

Unfortunately, due to the skill and time involved, there are not too many specialist endo surgeons who can do this. A general gynae definitely would not, some do patch excision but this is not as successful longer term or suitable for extensive endo.

You never really know with this disease but I had reviewed this surgeon's research and there was generally little recurrence within 5 - 10 years. Fingers crossed. By then I will be in natural menopause. But I would do it again.

I hope you will find a solution that will feel peaceful with you. That is the criteria i went on.

All best wishes