Advice or thoughts please

[Zoe78]

Hi all

Hope your all feeling as well as you can be.

Just wanted to see what your thoughts were. Brief background: had a lap nov 2011, found 1 patch of inactive endo on pouch of Douglas and my fal tube and bowel was stuck to my abdominal wall due to adhesions from being sterilised in 2007. Been having increasing pain since last year. Pain when needing to open bowels, very painfull when bladder full. Painfull sex at times. The all to familiar pulling pain when stretching coughing etc. I've tried to take all types of pill but get bad head aches and mood swings. The last couple of periods have been a nightmare not with pain but with constant crying and feeling seriously depressed. I am mid cycle at the moment and this seems to be when pain is worse. I have been sent by gp for blood tests for ovarian cancer and ultra sound scan. Which I had last week. When they did the scan I was in agony due to me having to have a full bladder. Then the lady said that she needed to do an internal scan there and then. I really wasn't prepared. I go for results tomorrow. So little worried. Please let me know what your thoughts are or any similar experiences. Sorry for the long story. Zoe x

[nette30]

Hi Zoe, sorry to hear that you've been going through such a tough time. My story isn't that similar to yours but I just wanted to send a little message to you to say good luck for tomorrow and I hope everything goes well. xxx

[Chrissie66]

Zoe, let us know how it goes. Thinking of you xxx

[Bez76]

Really hope it went well today. Thinking of you xx

[Zoe78]

Hi all

Just thought I would update you. All my test results came back ok. Thank god! So my doctor asked me when she said it was clear how I was. I told her that I have been in pain for 2 days. She started to talk about IBS. At which point I started crying and said IBS would not be a reason why it's so painful when I have sex. And the fact that 2 weeks out of 4 I have pain and constant crying and angry and fed up! She said that I can't have adhesions again because it would have shown up on scan. But when I had scan before my lap they didn't see on it that my bowel and tube was stuck to my stomach wall. She then said well it's probably the endo back and really going back on the pill would help. So she has talked me into yet again taking the pill for 3 months. The pill doesn't agree with me. I have no libido and horrid head aches. I feel very flat and tearful today although very happy I don't have cancer of ovaries. I really don't know what to do!!!

[esbjorn]

Hi

So sorry to hear that you are feeling so ill and in constant pain for 2 weeks out of 4. Did the gyneacologist offer any alternative treatments at all? Did he/she suggest any treatment for your inflammation and for your pain? Or is your GP helping you with anything against the pain & inflammation?

Apart from the surgical treatment and removal of excisting endo, apparently the two main alternatives for the hormonal treatment of endometriosis are

1) to prop up your progesterone levels (ie using hormonal contraceptives which boost the progesterone - where the body 'thinks it is pregnant')

2) to stop the production of estrogene in your ovaries (putting your body into menopause)

There are then several alternatives and different treatments available within each option.

Within option 1) one alternative is the Mirena coil - slow recovery but if progesterone is working against the endometriosis, the Mirena is the most gentle way in terms of hormones to do this - as the Mirena releases the hormones so close to the ovaries, the levels needed are much lower than the pill taken orally or the contraceptive implant. Thus many women have much less 'hormonal' side effects from the Mirena but better results. However the Mirena doesn't agree with all women and it can take up to 6 months for it really to work. But if it works - wonderful; almost no periods. Can be painful to have put in - especially since you are by now so very inflammed in the pelvic area.

2) you can stop the ovaries from producing estrogene temporarily - via hormone injections for example - which may temper the growth of the endometrial lesions causing you the pain and inflammation. It may possibly also temper your estrogene production in the medium term as well. This have certain side effects, some may be long term.

However firstly the inflammation (and thus a lot of the pain) needs to be treated as well. Hope you will get some help with this. Apart from using NSAID (on prescription) I have found green tea very helpful as it acts as an angiogensis inhibitor (the theory is that it stops blood vessels forming to feed the growth of endometrial tissue)..I noticed that it took two - three weeks to start working. I have also noticed that when my hormonal balance is better and the inflammation is down, my bowels (sorry TMI!) do not get so inflammed & painful (they stopped working at one point) and I can now eat as normal again! This without any IBS treatment - just endo treatment & NSAID & macrogol.

Please don't give up asking for help and asking for alternatives/optional treatments - there will be one out there that will hopefully be right for you. Take care xx

[Zoe78]

Thanks for you reply. I haven't been referred back to gynea which I was hoping I would be. She has just told me to take the usually pain relief and given me microgynon again to try for 3 months. I really feel that this pain is down to having abdominal adhesions again from having previous surgery. I could be wrong! The patch of endo I had removed wasn't on POD like I first thought that was my mistake I had it on USL. My discharge letter said it was inactive which led me to believe that it was not causing me pain but it was my bowel and tubes stuck to my stomach wall. I feel confused and back at the beginning again like I did 3 years ago. My gp did offer the cool boult I don't want to have that too many people I know have had so many problems. I know I could be different.

I have never been offered any hormone treatment to stop periods only taking the pill back to back. Can the gp offer these hormone treatments or will I have to see gynea for this?

[esbjorn]

Hi

Hope you'r having a good week (I've had a great week but completely overdone it - and the pain & inflammation is not great... )

I think you may have to ask your gynea for any hormone treatment (GnRH analogues such as Prostap/Zoladex). At least my previous GP would only deal with pain relief (I'm with a new surgery now but also seeing a gynea). I don't know what the proper NHS pathway is for this treatment - but would think it is through the gynea. Whether age plays a part when prescribing GnRH injections I don't know - but it is likely as it puts your body into artificial temporary menopause - and thus the side effects.

If you want to try the Mirena you could try speaking to your GP as it is classed as a contraceptive. Although, if I were you, I would probably like to be seen by a gynea to make sure that it is seen as part of your endo treatment (and also to make sure that you're not just left to cope)*.

So sorry for my ignorance but what is the cool boult your GP offered you?

Wishing you all the best. Take care xx

*i think a majority of us are though..

[Zoe78]

Sorry that was meant to say my gp offered me the coil but......

[angsim]

Hi zoe,

I have severe endo, but over the past 7 months have been having alot of pain in right lower abdomen, hip, leg and lower back, i also have been having nausea,bloating and feeling full really quickly. I also have been diagnosed with chronic urinary retention and have to catheterise myself every night. I had a ultrasound scan 2 weeks ago and there was a mass about 3cm on my right ovary. They dont know what it is yet, but they are querying ovarian cancer due to my symptoms, they cant do a ca125 blood test coz i have endo and it would be high anyway and be inconclusive. But it could also be an endometrioma where you can have similar symptoms. I now have to wait 6 weeks for another scan as they want to see if there is any changes. Im really worried too but will have to cross my fingers that its not ovca. I hope my story has maybe helped you in some way. I will cross my fingers for you too. Good luck and all the best. X