My experience with Endo and feeling completely lost

Hi All,

I am new to this site and thought I'd write a post on my experiences so far.

I first started having symptoms at 15 (severe pain, bleeding constantly for 3 months at a time, to name a few). At 18, my GP recommended having the Mirena coil fitted. This stopped the bleeding and reduced the pain.

I had the Mirena removed at 23, not wanting to have it fitted again, so I tried 4 types of the pill during this time. Unfortunately, my symptoms reappeared. After many trips to my GP's and repeatedly getting fobbed off with 'It's just period pain', I came across one young doctor that referred me for an ultrasound and then to a gynaecologist. The gynae wanted to perform a laproscopy, hysteroscopy and fitting of the Mirena coil, with thoughts the mirena would slow down the endo.

I had the op in July this year, recovered relatively well... or so I thought. 3 weeks after surgery I was in severe pain, so went back to my GP. He sent me straight to the hospital as it was so soon after surgery and my blood pressure was through the roof.

The pain seems to have worsened since the op, I am almost constantly bleeding and have had quite a few days off sick from work - not great when losing pay.

I tried to remain positive until my first appointment with the consultant after my op. However, the only options I have been given is to:

a) Get pregnant

b) Put up with the pain & request stronger painkillers like Tramadol from my GP

c) have an injection to bring on the symptoms of menopause (consultant didn't sell this idea to me)

d) have my ovaries removed

I felt the consultant pushed the idea of pregnancy a little too hard. I am only 24 and don't really consider this a viable option at the moment. However, the consultant said if I left it too late it may be very difficult to conceive. I would like to have children, but I don't feel ready yet.

I feel completely lost, the options provided by the consultant seem extreme. I'm not really sure if there are any more options available. Any comments / advice would be much appreciated

8 Replies

oldestnewest
  • Difficult one! The trouble with endo is it is fuelled by oestrogen and when you are in your fertile years you have lots of oestrogen. Endo in my case furred up and damaged my fallopian tubes which both eventually had to be removed. Unfortunately these ops failed to remove it all and years later I had even more plus adhesions (scar tissue) sticking fallopian tube stump to bowel and ovary to bowel the other side and into my stomach round belly button. Each surgery can cause more adhesions which are often related, that is why they don't like doing too many surgeries on women with endo and if they do they need to get every little bit out first time if possible or it can cause problems later on. Usually they do laparoscopies first (tiny camera to have a look in pelvis) to see what they are dealing with but even this can if not performed by skilled endo/adhesion surgeon cause some adhesions. Some people (like me) seem more prone to adhesions others are luckier. Obviously laparoscopy and hysteroscopy (minimally invasive surgery is best). They make tiny incisions in pelvis and can in many cases even operate with a tiny camera and cut or burn away endo/adhesions rather than radical open surgery. Apparently pregnancy helps to stop endo it is all to do with hormones. That is why the other option for older women or women with severe endo might opt for Zoladex type injections to send them into menopause and thus oestrogen goes into freefall starving the endo.

  • I also mean't to mention that Gps don't recommend Zoladex type injections willy nilly as if you are still a young woman who want's a family one day then menopause is a very much last option. Also, I found out from a nurse I knew that these injections which you have monthly into the stomach cost £300 each the gold star of treatment! if you go private that would not be a problem. NHS do issue these injections in some cases.

  • I have had zoladex for six months I stopped in July and I am now petrified for my first period (still not got one.)

    If I could I would choose Zoladex for a couple more years then have kids (I am only 21.)

    If you need to talk message me.

    Kind Regards

    Emma-Jane

  • I hear more and more about young girls being told getting pregnant is the best option. It isn't for some. I've already had two children and my symptoms actually got worse after my second baby. There are far more types of treatment than the ones you've mentioned above too so I don't know why they're the only ones you've been offered. The treatment I'm on at the moment is quite an old fashioned way to treat endo. I take norethisterone constantly for 4 months at a time, then let myself have a period and then continue with the norethisterone. Norethisterone is the drug they give you to delay your period whilst on holiday. It is the only thing that has worked for me so far. It's a progesterone pill (5mg instead of the normal pop pill which is 0.25mg). I haven't tried zolodex but have tried everything else out there and for me it's the only thing that's made any difference. Don't be bullied into anything you're not ready for hun, although saying that I don't think anyone is ever "ready" to have children lol.

    xx

  • Thanks everyone!

    I was advised before the lap that the Mirena coil would help as it had previously stopped symptoms, but I have been bleeding for 12 days out of the last 2 weeks, which in itself is making me feel pretty rubbish.

    The endo was found around my left ovary and fallopian tube, rectum and bladder and have suffered with 2 UTI's since.

    Emma-Jane, did you experience many side-effects with zoladex? I don't really know much about it. The way the consultant explained it to me didn't sound very nice.

    The consultant said that pregnancy is sometimes the 'cure' for some women and symptoms can stop afterwards, however, I know a lady who has suffered with the symptoms throughout her pregnancy. I didn't like the way this idea was presented as the best option and did feel a little pressured.

    I can't seem to get much information from my consultant which I find a little worrying and contributing massively to this lost feeling I have. Fortunately, there is one helpful doctor at my GPs so I am seeing him next week to talk things through.

    xx

  • Hi

    Very sorry to hear of the tough time endometriosis is giving you! I too have endometriosis and after years of similar symptoms to yours, beginning at 14, and endless trips to my GP being told it was 'just period pain,' was eventually referred to a specialist who conducted a laporoscopy and discovered the endometriosis. The endo was lasered away at the time although I too was still suffering with the stomach pains you mention.

    The Zoladex was then given to me for three months (no mention of a coil) - being 17 at the time and having menopausal side effects wasn't pleasant although found it did help to reduce the pain slightly. After the three months of injections, I was given another pill which didn't agree with me.

    The information initially provided to me on Zoladex was also vague, but after relocating and seeing another specialist, who has instructed my GP to restart the Zoladex for a year, has improved my understanding slightly. (Zoladex can usually be given for a maximum of 6 months although my specialist informed me using it for a year will be more effective as it does not full effect in the 3-6 month period) From what I have been told, the Zoladex supresses the 'female' hormones and therefore causes the menopausal symptoms of hot flushes. The needle itself seems larger than most and as it is injected into the stomach, is slightly more painful than other injections, although I have local anaesthetic which numbs the area. As the injection manipulates the hormones and causes the body to think it is going through the menopause, you obviously won't have any periods for the course of treatment which is FAB :) as the injections 'shut the reproductive system down' (temporarily) it means the endo won't worsen and adhesions shouldn't appear.

    I was given HRT patches soon after restarting the Zoladex as the menopausal state your body goes into can cause osteoporosis and the HRT protects the bones from this. This has helped me manage the hot flushes as it (from what I've been told) balances the hormones. After 3-4 months of HRT, the pain started to return for me (specialist said hormone balance wasn't quite right as the HRT tablets I switched to were a combined hormone and she wasn't able to tell which hormone I needed more/less of) so I have today (reluctantly) had the mirena coil fitted as it provides only the one hormone and the specialist hopes to 'experiment' with the dosage of another hormone to balance the side effects of the Zoladex, the stomach pain and see which hormones I need more/less of.

    Hope a bit about my history of endo helps.

    Any experiences with the mirena coil working/not will be most appreciated as I only had it fitted and found that in itself to be a horrific experience and am now suffering more than I ever have before with stomach cramps! Clinic have now referred me to the hospital as they aren't convinced it is positioned correctly and have asked for a scan to be done - fingers crossed I won't have to go through the experience again!!

    Emma-Jane, may be worth speaking to a specialist about restarting your Zoladex for another 6 months?

    Best wishes,

    Melissa xx

  • Thank you for the info on Zoladex. My consultant spoke negatively about it and it was briefly. She just pushed the idea of pregnancy.

    My experiences with the coil vary. At 18 I had the mirena fitted to help prevent constant heavy periods (often lasting up to 3 months). Within a month my period had stopped and the pain was virtually gone. I would've recommended it to anyone. I had this removed after 5yrs and didn't opt for another to be fitted (memories of the painful fitting ). Since then I tried a number of types of pill until the symptoms slowly reappeared. In July I had a lap and the mirena fitted at the same time. Since then, I've had more pain and more bleeding and feel this is not working. The consultant advised to leave it until December to see if things calm down.

    I hope things settle down for you and the mirena works. If there's anything else you'd like to know, please ask.

    Fleur x

  • Thanks Fleur, although I wouldnt wish endometrisosis on my worse enemy, it is at least comforting to know others are going through similar experiences and I'm not an alien :) Felt like a drama queen reacting the way I did to the coil being fitted but wasn't prepared for the pain it caused after the Dr saying it will only be slightly 'uncomfortable' !!

    Both specialists I've seen have been very positive about Zoladex and after my experiences of it, would recommend at least giving it a try as I've found them to be very beneficial in controlling the pain. Do you have a good relationship with your specialist and are there any other hospitals near you that you could go to instead as she doesn't seem to be very supportive/encouraging of possible treatments!

    Has anything been mentioned about the outcome of your lap and any other treatment? I'm worried about my fertility in later years as have heard horror stories although, like you, don't feel ready to have children. My specialist has also mentioned a possible 'cure' is pregnancy which I find slightly worrying that they would promote it as I'm only 20!

    Melissa x

You may also like...