Surgery waiting time and hormone medication

[Natashalsl]

I saw my new gyno on Thursday and I have to say I'm downhearted. As I was initially told I'd only have a 3 month wait for my next surgery but now it's looking more like 6. I know compared to what some other people are waiting it's not very long. But it just feels like such a long wait when the pain gets worse every month. I've never been on anything to slow the growth or pain, which he was pretty horrified that my last gyno hadn't sorted. So while I wait for my next surgery I'm being put on some medication to help. I want to know has anyone found hormone tablets effective?

[KSvedenmacher]

I have taken the pill for nearly 30 years (with breaks for pregnancies) and I found it very effective for the symptoms. The endometriosis still grows though. I came off the pill about a year ago as I was suffering from anxiety and depression on it (and that didn't get better when I switched to another pill) and the pain came back hard. So it definitely grew in all those years, but the pain was more manageable.

[Hidden in reply to KSvedenmacher]

I think this is what's happened to me but I'm yet to be diagnosed. X

[Natashalsl in reply to KSvedenmacher]

Thank you for your reply, I'll be on the mini pill so I'm hoping it helps.

[lynnieeeee86]

I was strongly advised to go on hormone injections by my doctor but i refused due to all the side effects with them.

Instead i put up with the pain everyday. I was on tramadol and ibroufen, but now i have had my laparoscopy, d&c, mirena coil and hysteroscopy im still in pain everyday. In which ive been told its a pain for life so get on with it.

Ive been exercising which has mentally been great for me and ran 5k for the very first time on saturday. But wasnt improving the pain. Also last week i cut away back on junk food, which i definitely think helped the pain. I went 2 days without taking ibroufen and paracetomal. Dont get me wrong i had pain but it was bareable. It was the first time since 5th march i went without painkillers.

I was taking the pill too before, but it didnt help and now the coil isnt helping. Really is just a matter of trial and error and seeing what works best for u x

[Natashalsl in reply to lynnieeeee86]

Thank you for your reply, I'll be starting the mini pill in a week or so. I'd love to exercise or even go on walks but honestly my stomach hurts so bad most days I just can't face it. I am changing my diet though so hopefully that will help x

[Hidden]

I am waiting for more surgery after a diagnostic lap back in January. So far, I've had 5 shots of decapeptyl (which did work initially, but unfortunately was not able to stop my periods fully and I ended up back in A&E in pain crisis a week after the 5th shot. I then had 5 weeks of norethisterone which didn't work and have now been put on cerazette. I also had a mirena for a couple of months but that was taken out because I was very anaemic at that point and the mirena caused constant bleeding. Prior to that I'd had no treatment at all, couldn't even get proper pain relief. Although the decapeptyl didn't work long term the docs have said that it will still have shrunk the endo growths which will reduce my pain a bit in the short term.

The hormone treatments aren't great but I have had enough of a reduction in pain to make them worth it. I couldn't cope otherwise. I have very extensive endo - large nodules on the uterosacral ligament, left adnexae close to the ureter, right adnexae where the bowel, uterus and ovaries are glued together, plus another nodule the size of a golf ball on the rectosigmoid colon. I also have adenomyosis.

I am taking a combination of diclofenac, mefenamic acid and co-codamol which combined with the hormones gives me manageable pain.

[Natashalsl in reply to Hidden]

Thanks for your reply, I'm glad to hear you've got some pain relief. I'm already taking mefenamic acid which doesn't do much for me most days. But hopefully with taking the mini pill on top and probably some pain relief it will help. I try not to take pain killers unless I'm in agony as I don't want to overload my body.

[Scooteeder]

I was diagnosed with Endometriosis in 2011 - which was when I had my first lap. I had been experiencing really obvious symptoms for over nine years before this, but doctors kept getting my diagnosis wrong.

In the nine years whilst I was waiting for a correct diagnosis, doctors attempted to fob me off with all sorts of hormone medications. First, I was advised to take the Pill - which I refused to do. I had heavy, irregular and painful periods as a teenager, and I tried the Pill then. It was hoped that it could "regulate" my periods - nobody bothered looking into the cause of the period problems! Just give me the Pill, and hope I'll go away. Well, I tried first Dianette, then Marvelon. I gave them up due to intolerable side-effects that included bloating, water-retention, feeling moody, and spots (which are all things that most teenage women SO DO NOT WANT!).

I was also made to try the Mirena coil device sometime @ 2008. I can honestly say that I hated this Mirena! Insertion was really painful - it was done in a Gynae outpatient clinic. I was offered NO pain relief whatsoever. The Mirena did nothing at all to help ease my symptoms. I still has breakthrough bleeding which was on occasions pretty heavy, bordering on flooding (which was one of the symptoms of my period problems that I MOST wanted rid of!). Not long after insertion, the Mirena dislodged and slipped. I could actually feel this as a sharp, dragging pain. After this, I demanded to have it removed but when I went to the G.P. to ask this, I was treated like a naughty schoolgirl. The G.P. kept insisting that I "keep trying with the Mirena as you have to have it for at least 6 months". Well, I did NOT want it at all, especially because it had slipped. So out it came (another very uncomfortable experience)!

I then managed up until my lap with NO hormone treatment at all. I am aware that under such circumstances you get the FULL effect of your Endo symptoms, but as far as I was concerned, this was something I had to put up with. My symptoms were NOT in the least bit pleasant - I have DEEP INFILTRATING ENDO, so the pain is absolutely hideous! I also had bowel symptoms, fatigue, cramping, bloating, water-retention, flooding, heavy and clotty periods... NOT in the least bit nice. However, I do feel that if I had allowed doctors to keep giving me medication that masked my symptoms (but still allowed Endo to grow), I would NOT even have had my Endo diagnosed. Instead, they could have fobbed me off forever! It was only because I clearly recorded ALL my symptoms in a diary and kept arguing my case that I believe I got referred for a lap.

After the first lap, I ended up having 3 more! Inbetween, they wanted me to try things like Zoladex or Prostrap. I point blank refuse to take hormone treatments now. This is part due to side-effects, which I do not care for. My feeling is that it is stupid to trade the symptoms of Endo for the side-effects of medication that does NOT remove Endo. As far as I am concerned, only surgery is effective. However, it is also partly due to the belief that being given hormone treatment equals being fobbed off. My feeling - and experience - has always been that if you accept hormone treatments it leads to delays in diagnosis, or delays in surgical treatments. Doctors just seem to think they can get you to accept hormone treatments INDEFINITELY, which is NOT good.

This is my opinion, for what it's worth. The choice is really up to YOU to decide what to do. If I were you, I'd be contacting the hospital to ask why they are delaying your surgery. I will inform you (because I am an ex-Social Worker who worked in a Hospital Team) that there are STRICT RULES concerning CANCELLATIONS OF SURGERY which YOUR hospital is BREAKING. The rule is this...

Department of Health says ALL patients who have their operations cancelled for non clinical reasons on the day of surgery are to be offered a further date for surgery NO MORE than 28 days following the date of cancellation. If this cannot be done, then the hospital can be asked to FUND treatment elsewhere. (For more information on this rule, read institute.nhs.uk/quality_an....

This is also included in the PATIENT'S CHARTER, so maybe you could tell your hospital this!

Anyhow, best wishes and I hope you get this all sorted out to suit you. E. x

[Natashalsl in reply to Scooteeder]

Thank you for your reply, I wasn't aware that if I get my surgery cancelled there obliged to give me a date 28 days following. That's very interesting and useful to know. I went on the pill at 15 because ever since I'd started my Period at 11 I'd been in pain and they were so heavy and irregular also. I was only taken off it at 22 when I was told I had chronic migraines and there for it was dangerous for me to be on it. My new gynae insisted I should have been put on something else and it was dangerous for me not to be. He's now put me on the mini pill to help my pain and the growth until my surgery and then he said when I'm not trying for a baby I will have to be on it. I'm hoping after the surgery and with diet and exercise change I can go without it x

[Scooteeder in reply to Natashalsl]

I'm sorry to hear that you had such problems with you periods. Not pleasant, is it?! I recall having had heavy, painful and irregular periods as a teenager. Maybe that is a sign that somebody will later in life get Endometriosis? Who knows?

Anyhow, I'd be cautious in respect of what the Gynae says about the Pill. Some women do choose to take it to reduce symptoms of Endo, but it is not a cure. Furthermore, you do have to be aware that there may be undesirable side-effects from taking the Pill. Personally, I feel that there should be no need to take it, IF ALL THE ENDO is removed during surgery. I suspect that sometimes, Gynaes suggest that women take the Pill because they cannot be certain that all their Endo IS gone.

I've been determined to do without taking hormone treatment of any kind, because personally I cannot see the point in swapping Endo symptoms for side effects of medication. Also, I do not see the point in masking my Endo symptoms, because the symptoms are actually pretty useful, in that they tell me when the Endo is active, and whether it would be best to have it removed. Without symptoms, how do I know how extensive my Endo is, or where it is? The symptoms give me an indication. I would rather opt for surgery every time. I know from looking on this forum that some women do manage to cope with surgery, diet and exercise.

All the best, anyhow. x

[Cupcake1617]

I'm waiting my first lap but I had no pain problems or periods with the implant - I spotted daily for quite a few months until it settled down & had face acne. I then went onto the depo injection which stopped periods so no pain & worked for 8-9 months, only stopped this before Christmas to see if there was a link between pain and periods and there sure was. Like you, I was told 4-6 weeks for lap and it's more like 14-16, couldn't take the pain anymore and lack of life so I went back on depo on Thursday, Saturday morning I woke up and felt weird because I think this is what normal used to feel like! Not sure how long it'll last, but I needed to give something a go. Haven't bothered with any pills as I'm useless at taking tablets unless I'm in pain (as that's how I remember to take any). What works for one person, won't for others - you might need a bit of trial and error to see what helps you. Hope you find something soon

[Natashalsl in reply to Cupcake1617]

Thank you for your reply, I am going to give the mini pill a few months try and see if it helps in anyway. Most of the side effects I already suffer from so I won't be able to tell if it's the pill or not.