Am I being irresponsible?

I saw my GP yesterday about different hormone treatments to slow/stop my endo coming back after surgery. The gynae team who did my lap were really persuasive about the importance of using some sort of progesterone-based treatment, but my GP is a bit more nervous about it because of my history. I can't take the combined pill because I get migraines. I can't have the depo injection because I had anorexia in my early 20s and my bones are already thin. My GP is worried about all the rest - the mini-pill, mirena, zoladex, etc - because of the potential impact on my mood. I've had depression on and off since I was 11 and it's been serious enough for me to be hospitalised a few times, so I'm really scared of destabilising my mental health, plus I'm really sensitive to side effects in general.

The surgeon found and removed a bigger nodule and some scar tissue from my Pouch of Douglas (Ouch of Douglas, amiright?!) alongside more minimal endo in a few other places. I think that nodule may have been causing 95% of the pain because the most debilitating symptoms I had were bowel-related, but my surgery was only two weeks ago so I'll have to wait until everything is properly healed to find out. I'm really tempted to just wait and see how long it takes for the pain to return and then push for surgery again rather than take anything to actively stop more endo forming, but I know the gynae team won't be happy about that. Am I being really irresponsible if I avoid hormonal treatments? I might be making more work for my surgeon later on, but then I might just end up making more work for the mental health services if I do take them!

I think I'm mostly just looking for people to tell me my decision is okay! Bit pathetic really, I'm 31 and should be able to make and defend decisions about my body, it's just a bit difficult because I still don't know much about endo so I'm not really confident that I can make sensible decisions yet!

12 Replies

oldestnewest
  • Ok I'm going to try and be straight forward here. If you have had pod endo and a nodule removed it's likely that the endo will return and you need to minimise the amount of damage that any returning endo causes.

    If you do nothing you could end up with more crippling pain whilst waiting for surgery (up to a year where I am), bowel damage could be more severe - bowel resections and colostomies aren't fun, never mind any fertility issues or damage to other organs. . . All of which could put you through a lot and cause quite a few mental health issues.

    I know you're saying if you leave it there'll just be more work for the surgeon later on - it isn't as simple as that, unabated endo growth with no management can cause quite serious damage and anatomical changes that sometimes can not be operated on effectively.

    The idea of taking a hormonal therapy is to minimise disease recurrence so you can get the most out of the surgery you've just had, to lower the risk of further pain and problems in future.

    I have had issues with depression previously so was wary of going on prostap, however I felt that it was worth the risk as my quality of life was really suffering. I was put on a one month depo so that if there were any issues it would dissipate out of my system quickly. The first 6 months I was on it I was grand (few menopausal issues, nothing major), then I had a break for a while. The second time I did feel depressed after a few months so I came off it, within 3 wks I was fine. The treatments you've mentioned would come out of your system within a month or less too, so it's not like you'd be having residual effects for six months or anything.

    Like any treatment you'd need to give it time, if you feel down after a few wks that could just be your body adjusting, I'd recommend at least 2-3 months to see if something works for you. In terms of the protection it offers you from further damage it's worth it.

  • It was suggested by a general gynae that I take progesterone but when I spoke to my GP she suggested that as I had severe depression in my teens and twenties that it was probably not worth the risk especially as I already have low spells from being in pain all the time. She said I could try it if I really wanted but that I may get suddenly depressed and need to stop the pills and it could take a few weeks to get back to normal. Having been in that black hole I want to avoid it if possible. I had a fear that if I did get depressed that my own body chemistry would not be able to pull out and I would end up on anti-depressants again and they were just a nightmare, especially coming off them. I get migraines, not often and not too bad, with the flashing lights and visual disturbances but I take a combined pill and have done for years.

    I think it is a case of whether you feel the risks outweigh the benefits (or vice versa). Had my GP been more positive about the progesterone I may have been more inclined to try it. All you can do is research and go with your instincts.

  • I totally get where you're coming from and if that's how you adamantly feel then I'd stick to your guns, just maybe give your recovery a few more wks to see how you're doing.

    From my experience of several gps they really aren't equipped to make judgements on endo, but that's just my experience. I've been there with the anti-d withdrawal and all the rest of it. With severe endo it's so important to make it a priority. Having the experience of being told I could end up with a colostomy for life/need a hysterectomy, 6 yrs multiple surgeries has caused me far more trouble with my mental health than progesterone ever did. If I had had a chance at preventative treatment before things were so advanced I'd have taken it.

    Try not to let the fear of depression rule you, if you have strategies to deal with it it will never get as bad as what it previously was, because evidently you know how to conquer it! It's a tricky one, as obviously you don't want the upset if things don't agree with you. Risky either way, just as you say weigh it up and see what scenario seems more problematic for you.

    Good luck!

  • Thanks for replying to my post, all opinions are appreciated, I seriously don't know what to do! Mindstorm pretty much covered my concerns in her reply to you (I'm the original poster, she just seems to have really similar difficulties!), except that I can't take antidepressants at all - they make me manic, suicidal, or both, and I've tried many different types. I struggle enough to manage my mental health as it is with medication not being an option, hence the progesterone fear. I also don't have severe endo, or at least that's what my surgeon seemed to think. It was only minimal everywhere other than that one PoD nodule, and that wasn't big, just in a really painful place! Like I said though, I know next to nothing about endo, so I take your point that the PoD is potentially a risky place to have a recurrence.

  • Hi,

    No matter what anyone says, it's entirely up to you. I disagreed with my consultants treatment plan (mirena coil and part of my bladder removed) after my diagnosis. But I looked into alternatives. I fought for 8 years to get my diagnosis. Having started with sever menstrual cramps and migraines at 15, 4 of my family members have endo so I was always aware I could. I went through 3 different consultants and now on my fourth. I went through so much agony in the last 8 years, I can only imagine what would happen if I left it another. So I started on Prostap when my consultant offered that alternative. I, like yourself suffer from depression and can't go on any form of contraceptive pill. I was very weary about starting it as I would like children, and with my depression I didnt think it would be the best for me but I had to do something. I'm currently experiencing low days, symptoms of menopause some pregnancy like, but apart from my bladder which will possibly still need removing, I'm in minimal pain. The best it's been on 2 years. I can go on hrt if my depression becomes too erratic, but my percent rate of getting through bad days is 100%. Probably because I can actually live abit more now and not on as many painkillers. I can actually start getting abit of 'me' back. I'd lost jobs, friends, partner and two babies because I was ignored by doctors and therefore my endo was left.

    I wouldn't advise you to just leave it. But still do what you thinks right for you. It still torments me that I have injection every month to stop myself having a child, I can't justify it when it's the one thing in the world I want. But I have to look at the positives. Don't let any consultant tell you you have to have something. It's you that lives with endo, and it's your body. Look around the Internet. Read other people's experiences with endo treatments. See which treatment would best fit you. Hope this helps!

  • I'll be watching this post with interest as I had the Mirena removed last week as I couldn't stand the side effects any longer ( low mood, mood swings, weight gain, hair loss, sore boobs, erratic bleeding).

    I have an appt this week with gynae so will be discussing next step I presume. I had a big resection op a year ago and I'd like to actually see if it has worked and go hormone free for a good while but also not sure if it's the best way?

  • Hi :-) No you are not being irresponsible, the opposite in fact you are weighing up treatment based on your mental health - trust your gut feelings with it. If you have had all the endo thoroughly excised for most women it does not recur. Even for the minority where it does, as far as I know there isn't really any proof that taking hormones would stop that happening, and many women do get terrible side effects from them so choose not to take them. Hormones don't treat the disease itself, they just help with the symptoms for some women. The relationship between hormones and endo is far from black and white, endo also has progesterone receptors too.

    Please don't feel pressured into it, some of the gynaes are incorrectly very forceful with hormones, (I have experienced it myself) your GP is correct to be concerned as Progesterone and particularly GnRH drugs like Zoladex, Prostap etc can have a significant negative impact on mental health, they clearly have your best interests at heart. If you do just want to be on a contraceptive pill, it would possibly be wiser to go on a combined one the added oestrogen might be better for you.

  • Thanks :) I'd actually be happy taking the combined pill because I took it for a few years in my early 20s and got on with it okay. However, because I get migraines with aura my GP won't prescribe it. Apparently a lot of GPs are less strict but they had a girl at my surgery who had a stroke in her 20s due to the pill, when she'd told them about her migraines, so they just won't do it now. Annoying, but possibly less annoying than having a stroke!

  • Although that's really sad, it seems slightly unfair too and that they should still weigh up the risks thoroughly on an individual basis. There are lower oestrogen combined pills available like Loestrin 20, Mercilon, Femodette and Qlaira.

    You can also buy the pill online from Lloyds pharmacy, you have to answer a lot of questions first (far more in depth than what most GPs ask - but in some instances they are still happy to prescribe when someone's GP isn't, based on doing such a comprehensive assessment!) If their GPs agree to prescribe it, you can then pick it up from one of their pharmacies, and they just check your weight and blood pressure in store. 😊

    onlinedoctor.lloydspharmacy...

  • Hey kml, sorry I got confused earlier and had thought it was yourself replying.

    Do whatever is best for you and will make you feel happiest about your treatment moving forward. If it's any use the coil and a few pills didn't work for me so it was a process of trial and error until prostap was effective. If you do want to pursue some sort of progesterone treatment at any point you could organise extra help and support around you at the time just as a back up. Hope all works out xx

  • Thanks for all the replies, I really appreciate getting a range of opinions. Seeing all the different ways of looking at it helps me work out which I agree with most :) I'm still not totally sure what I'll do but it's good to talk about it, I don't know many people with endo offline and it's hard to random start conversations with people about their periods!

  • My endo specialist nurse has just finally agreed that hormonal treatment doesn't agree with me so I'm currently making a decision about whether to have a further operation or go down the pain clinic route. You know your body , listen to it. Maybe go back to your specialist and discuss your concerns about hormonal treatment and your mental health. Good luck x

You may also like...