Endometriosis UK

Does anyone have the answer?

I am a 26 years old female on the edge.

I had all the usual symptoms when I was younger, heavy, painful, irregular periods, couldn't use tampons when I was younger, and started my periods at 11. I was at the doctors every week until they decided to investigate. I had a laparoscopy in 2010, they found endo everywhere, bowels, bladder, and the usual female places. Unknown the anyone they perforated my bowel during the op and sent me on my merry way with the devastating diagnosis. I took peace in knowing that there was a reason I was in so much pain and I could try and do something about it. 5 days later and getting no better after the op my mum decided enough was enough and rang an ambulance. They came, pumped me with morphine and took me to hospital, I had an emergency laparotomy which thankfully saved my life. It lasted 8 hours in which they found 2 15cm square cysts, I had septicaemia but I was alive. My left tube and ovary are useless and my right side is damaged. I've been told to have a baby but I'm infertile, I will need IVF but my partner isn't ready yet. It's been 4 years since the operations we've had our ups and downs because of it but still together thankfully. Present day I am really struggling with the endo, it's horrendous. I have a 5 week cycle, the first week after period isn't too bad but then the pain starts, almost passing out with bowel pain, period pain on a high which radiates down my legs. Horrendous back pain etc... I feel awful, fatigued, emotional and just in constant pain. I get a week break out of every 5. I almost went to hospital to demand a hysterectomy last week I had just had ENOUGH. Is there something I'm missing... Does someone have something magical to help me... Please...

Thank you in advance if you reply, I really appreciate it!

3 Replies

I am sorry your feeling so rough but I have to ask as you didn't mention it once, what have you tried or done to stop having periods or to at least reduce the number you have in a year?

If you are currently on 4weeks out of 5 plagued by bad period symptoms then thats 10 months of the year written off.

There are various ways to stop your periods and in doing so should really improve your quality of daily life.

A hysterectomy is very drastic and not the solution in terms of your endo, and certainly puts the kybosh on any wishes to have a baby.

At present your ovaries are still working - so too is the uterus, even though there is a blockage in the way both sides, there's no reason to think you are infertile - just needing assistance to by-pass the blockage and get that ova to the uterus. Either by IVF of some other assisted conception methods.

If that is a goal you would like to hold on to for some point in the future, it seems to me the most sensible approach is to stop having periods, period pains and worry about what's happening with each menstrul cycle.

If you try the birth control pills packets , taking them back to back over 3 to 4 months then having a break to have a period before starting them up again, that reduces your periods to 3-4 a year.

It does mean taking tablets every day.

Better still would be the longer term options. The Implanon arm implants last 3 up to 3 years and many ladies find these stop their periods.

Better than that would be mirena coil which lasts up to 5 years, and is easily removed in most cases if you do decide to start a family sooner than the 5 years.

It takes 4-6 months to get working then it stops periods, period pains, bloating, PMT, saves a fortune in sanitary towels, tampons and toilet paper, and best of all gives you back the 10 months a year you are lliterally wasting on period hell.

I've got the minena in and working and it really has transformed my life quite dramatically.

I had a laparotomy, severe endo all about the place, with post op bladder complications afterwards for 17 months, part of the procedures done in that op was to toinstall a mirena coil. it took about 5 months to kick in, and in the years since only 1 blip which gave me two periods a month apart, they weren't heavy but were more than just spotting, and since then not a single incidence of even spotting.

Prior to that my periods were not regular they went from every 2 weeks to 5 weeks so there wasn't much pattern to follow, I always felt ovulation pains inbetween, and the periods themselves were long and heavy and often didn't even stop with Transexamic Acid blood clotter drugs.

I have none of that now at all. I still have a grumbling ovarian cyst recently developed on my one remaining ovary - the other was whipped out in the laparotomy.

But apart from that - and the chronic fatigue i've had for a very long time now, there is no monthly pain causing me any bother.

In answer to your question - my recommendation is mirena coil (it doesn't suit everyone but is certainly worth trying) because it could work for you and sort you out within 6 months and give you back all that life you are missing out on.


Thank you so much for taking time to reply and all the information you have given me. I am very very scared of birth control, I think this stems from my nana researching it and giving me all of the side effects and long term damage it can do. I know that is isn't good for you at all, I've had the marina coil, it was so painful and I had it out 3 days later. I've taken birth control but it makes me rapidly gain weight and makes me vomit. I've had the implant in my arm and that made me ill and I've also had the injection but you arn't supposed to use it after so long so I had to stop! I really need something other than birth control to help but I don't think there is anything else?!

I've been told I am infertile, but if there was a miracle that I could fall pregnant the doctor said it would be a failing pregnancy or ectopic!

What I really need is a baby but if one half isn't ready then there is nothing I can do!



So sorry to hear about your situation. Impatient has given excellent advice. I have never had the mirena. It seems to work for some women but not for others. My understanding of what I have read on the subject is that many women get off to a very bad start with the mirena but if they accept several months of pain and upset it can settle down. Impatient mentions this too. I am wondering if it would be possible to have it fitted again and manage the pain in the short term with appropriate pain killers? It's just an idea. Some women have had a few tries at the mirena and eventually it has worked.

Also, was your surgeon for your lap and first op an endo specialist? Was there a colorectal surgeon as part of the operating team? You need to find this out if you don't know. It seems odd to me that your cysts were only discovered during the emergency op if I have understood correctly. Were the cysts cut out or do you still have them?


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