Frustration

I saw a nice doctor this morning.

His opinion was it was too early to do anything much, which I logically concur with, and after he’d taken my blood pressure twice(once lying down and then standing up to compare them and see if there was a sudden drop) he seemed happy my recent blood loss had not had a serious effect on me.

The trouble with all this is simply that I don’t know what to do. I don’t feel either well or ill, just a bit wobbly and tired. I felt fine on Sunday, bit of cramps but nothing to worry about, so I went out for a nice walk in the forest, in search of the Dartmoor ponies they released there. Husband and dog were with me and it was fine. Couple of miles on even ground and then home for tea. But by half one in the morning, I was bleeding heavily again.

I just don’t know how to go on. Should I stay home, wilting, or forge onwards regardless? I can’t find any helpful information anywhere, nor can I find anyone I can actually ask for advice where I won’t feel stupid and a bit of a hypochondriac, because no one has told me WHY I am bleeding this much, or this erratically.

I haven’t seen a single female doctor either; they don’t have one at my GP surgery. I’m not saying men can’t imagine what it feels like; but that said, can you, guys? And after a good 34 years of menstruating, I am surely the best person to know if something is normal for me or not.

I’m starting to wonder if I would have been better off going to A+E on Saturday morning and making sure I got some proper answers. I’m not working this week, but that doesn’t mean I can sit around doing nothing all week. I want to know how long this is likely to go on for; I’m teaching next week, and the ladies among you may well understand how being in public with an erratic bleeding pattern is nerve wracking. Moreover, in July, I have a day trip to Boulogne as well as a probable 3 day trip to Paris.

I’d really like some decent medical advice and support. Just ’cause I seem calm and logical and sensible it doesn’t mean I actually know what’s happening to me; I don’t want a fuss, sure, but I’d like some understanding.

Sometimes being a bit of a Stoic just doesn’t cut the mustard, and today is one of those days. I’d like to scream and faint and go all girly, just this once, please….

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53 thoughts on “Frustration

  1. Hi, I popped over from Mad Priest. I’m your age, and although I haven’t had anything so severe, my doctor did mention a procedure, probably the one you allude to in your previous post, and held it out as an option if I continued with erratic bleeding. She said it is simply the result of fluctuating hormones as I enter perimenepause. She has given me progesterone a few times to “reboot” my system. I can’t take estrogen, but some sort of hormone regimen might help you. Perhaps they could just put you on the pill for a while.

    I’m sorry you are having to deal with this. I gather that the procedure is safe and relatively quick if you determine yto go that route.

    • Hi Alice,
      thank you for coming here; I’ve known jonathon for a very long time but only tend to read OCICBW occasionally. The post today about the financial state made me laugh ironically as I did some research a few years back about the cofE finances!
      To spare the male readers here, I didn’t mention on open blog the fact that I had had a mirena coil put in six months ago, to help ease the pain from severe endometriosis. Which it did. but it then made me bleed almost the whole of the last six months, like a dripping tap. On Thursday we agreed it wasn’t doing me any good so the doc at the hospital removed it. Not much problem until saturday morning.
      My main worry has been all along that i could feel the damn thing when it was in, because I was almost sure it had been put in skewed, and now it got taken out, it’s left a wound that’s now bleeding like a rushing tap every few hours. I daren’t go out right now for this reason.
      Every time we try something, the knock-on effects seem to confuse things heavily and even make things worse. I’m seriously considering just bowing to the inevitable and letting myself get hooked on opiates until the menopause kicks in naturally.
      Thanks for the ideas, though, and the solidarity. Much appreciated!

  2. Not a doctor, but just someone who had lots of gynecological intervention over the years. Did the doctor rule out anemia? Did they do an ultrasound? I put up with heavy bleeding for years, since I was still trying to get pregnant. Took iron for anemia, but that didn’t help enough. Finally one exam plus ultrasound gave a diagnosis of fibroids, which resulted in a hysterectomy at 37. After that–no more pain, exhaustion, headaches, confinement, etc. Surgery isn’t the first choice, but in my case was a blessing.

    • Hi Ginny,
      no ultrasound, no blood test.
      had fibroids, had them removed. had ovarian cysts, had endometriosis.(still got it)
      Sometimes I think I ought to catch an STD and get the full set of icky things affecting one’s bits!

  3. I am not a dr. I am a nurse practitioner and would not attempt to diagnose anything through a blog. However, there are so many variables. If your bleeding is much heavier, as you seem to indicate. There is some testing that probably needs to be done to determine if or what the cause is. There are a number of options but you really need to find a medical person who will sit down with you listen to you, discuss and offer explanations. Find someone who will do that. You need to know the cause of this.

    • Hi Kay,
      thanks for your input. I do wish doctors would manage to find the time to sit down and really listen. the last time one did, I moved areas three months later, but he only did after I’d written a long letter explaining my thoughts and concerns.

  4. Hi viv, I saw MadPriest’s entry and tho I am not a Dr. and don’t play one on TV, I did have ‘female’ problems. Excessive bleeding, tiredness, depression. I was 37, and was diagnosed with Fibroid Tumors. At that time, not many doctors did Fibroid excision,
    which apparently is common now. My gyn recommended and I had a hysterectomy. He left my ovaries. Endometriosis(which i probably spell incorrectly!) is a whole nother ball of wax, so I have no real advice, except to commiserate with you. I will say that I have one child who is now 34, and that was the plan all along, so I only feared early menopause. That did not happen.
    Yes, hormone fluctuation is closely tied to a lot of these problems.

    Take care of yourself, and make those doctors really talk to you.

    • Commiseration is good, Susan.
      The whole thing is so complex; endometriosis would not be cured by hysterectomy even if they took ovaries, because the stuff is loose in the body as far as under the diaphragm. I don’t want a hysterectomy because that would then entail years of HRT etc, bone density issues etc etc etc, not to mention the whole other set of issues like nearly every woman ends up with bladder weakness or worse.
      The last ultrasound spotted what they think is a calcified fibroid; I wonder if the removal of the mirena dislodged that or soemthing.
      i have a daughter who is now 20; I don’t really want more kids but even so, I’d rather not make any decision that would be final.
      Any advice (short of a kalashnikov in the handbag) on making doctors talk to me??

      • Oh, I understand your daughter’s age now. I thought she was 2!

        As for the Docs, that sounds like the best way to approach them!

        Oh why can’t there be a Dr. Marcus Welby, M.D. anymore? (he was a wonderful md on TV about 40 years ago. 😉 but of course he wasn’t real!

      • I can see the confusion what with the candle and the cake and my typo!
        I have to admit for the sake of utter truth, the doctor I really like and trust is my pain management chap who I see about 3/4 times a year. He really understands who he is as a doctor and I’d love to see him honoured for his kindness and his thoughtfulness. His whole department has been designed to make people feel comfortable and in a healing space. You don’t get that very often in the NHS and it’s a shame his specialty is pain. he even has a lovely voice; he could take seminars on bedside manner.
        One of the youngsters who works during the summer at the school I work at, is a medical student and he’s the most arrogant, smug little bastard I’ve ever known (covered by expensively learned manners) and I shudder at him ever practising. he’s also a fundamentalist christian who believes that women who have caesarians will go to hell….

  5. Oh dear, that sounds awful. I hope you find a doc who will take some time with you. I know folks who take a friend or relative with them to the doctor to take notes and keep the question and answer session on track.

  6. MP sent me. Now in all fairness, I’m the kind of doctor who gets the bits after they are removed (surgical pathologist) but an earlier comment is very appropriate regarding wondering if you still are anemic. I really don’t give “medical advice” on the internet but it does sound as if another CBC (blood count) might be in order for starters. I think mostly this is more about finding a doc you feel more comfortable. I tend not to think of that in male/female terms, but however you can still do a little “practitioner shopping” in terms of your health care system may be in order if you feel this doctor doesn’t work with you the way you prefer.

    There are lots of things, as Kay points out that MAY need to happen in working this up but I think the most important one is to get a practitioner you trust. When you are sort of wanting advice on the Internet, that’s kind of a red flag you and this particular doctor may not be a good match!

    • Kirkepicatoid, you made me laugh about getting the bits afterwards!
      the last blood tests I had were in february and the doc today didn’t think it was long enough to see a change.
      I do think I need a doc I can trust but somehow gynaecology seems to attract men who don’t actually like women…

  7. Go back to the doctor. Explain ‘heavy bleeding’ (# of what-size pads per unit time, increasing with time, decreasing with time, whatever) and fatigue – you should at the least get a simple evaluation for anemia (hemoglobin/hematocrit). Needless to say you should be getting iron supplements in your daily multivitamin. It may be a simple fluctuation in hormone levels causing the problem, though that should clear up soon. You may also have a bit of low-grade inflammation of the endometrial lining, common enough with IUD users, which may be treated with appropriate antibiotics.

    • Hi Nancy,
      I do take iron supplements from time to time and my husband has been plying me with red meat!!
      The thing with the heavy bleeding is that it’ll be fine for hours, just normal level bleeding and then wallop, through a nighttime pad in five minutes.
      thanks for being here!

  8. Blood test to see if you’re pre-menopausal?

    No MD here. Also came via the MP. But a blood test is easy enough. And at least that would give you something to do.

    • I asked about that blood test last time i saw my usual gynae man; he said he could not see the point! He reckons they’re too imprecise to be worth bothering with!!
      thanks for the thought though!

      • I wish I had that kind of sass, Thera, I just don’t. I’m too British! Plus I have a strong suspicion they pump something into the air that makes even tough women go all weepy and useless before they get into the consulting room.
        I’m working on the hope that as my mum was 40, my nan 42 when they went through the change, I might be also early. It doesn’t seem fair to start menstruating at 9 and then keep on much past 40, does it?
        if reincarnation works, then I’m booking my next go-round as a man!

  9. Get a second opinion. Could be one of several things, but what I was told when I eventually got a second opinion after months of suffering was that no woman should have to put up with it in this day an age. There are lots of treatments available but the first step is a specific diagnosis, not just some vague “oh, you’ve got post menopausal women’s problems”. If your current GP is not willing to investigate further, find one who is.

      • I read it as pre, Lisa. I’ve done long shifts like that and I talk absolute garbage by the end!!

    • I had a similar thing a few years back when I was having breast discharge (green too) and was simply told it’s just your age. No mammogram (they said I was too young) no biopsy, and the most cursory of exams.
      I think they’re determined to make me suffer because I have said unless it’s life threatening I don’t want a hysterectomy. I think they just want women like me to be broken down till they beg for the surgery.
      I had to have appendicitis (caused by the inflammation endometriosis created) and have to be rescued from the wilds of the countryside by helicopter just to get an accurate diagnosis of endometriosis. Everytime the inflammation on the appendix caused me to faint from pain (once a month) they said(without Ct scan or anything) it was an ovarian cust bursting. It took the damn thing almost bursting to get any real help.
      It’s no good, the only thing for it is a total sex change!

  10. Also sent here from mad priest. Simlar to several others who have commented, I had massive bleed problems in my 30s. The diagnosis was fibroids and I had a hysterectomy at 36 (the alternate treatment for removal of just hte fibroids was not really in play then, sounds like a much better option now). I kept my cervix and my ovaries so I still am physiologically well aware of cycling. No regrets 10 years later, but having a listening primary care provider was essential.

    Kirkepiscatoid and NancyP are real life doctors so their suggestions are worth much more than any anecdotes.

    Good luck. Nothing worse than this kind of worry!

  11. Came from MadP. Not a doctor. I too would love to see you have a test to see if you are anemic. Also maybe the best thing to get attention is, next sudden bleed, just do go to A & E? This sounds most unpleasant. The one reassuring thing I can say is, I did have a hysterectomy young, and have not had any bladder problems whatsoever afterwards. I have one ovary left in. Had a friend who had fibroids who was having the heavy bleeding issues and when her blood was finally tested she had a hematocrit of 11!!! (normal more like 40 on the scale they were using). Good luck.

    • Hi Terri,
      glad to hear of your trouble free hysterectomy; you must be the first lady I’ve heard of who hasn’t had trouble! I’m told it can be down to the skill of the surgeon.
      I may well take myself to a+E next time it happens. In feb, my bloods came back normal, so hopefully anaemia isn’t an issue.
      thanks!

      • Should add that I also had absolutely no negative after effects to the hysterectomy; I did choose the rather unusual step of keeping my cervix, don’t know if that helped avoid them.

        Good surgeon essential.

      • IT, Good surgeons are in short supply in this district; could well be part of my reluctance to go under the knife again. That said, they didn’t want to bother dealing with the chocolate cyst, despite the fact that a bursting cyst can cause serious issues. I had to explain that as I travel a lot for work, including out of the UK and on the Continent, having a cyst burst while on a coach crossing the Channel(either ferry or tunnel) is really not my idea of fun. Nor is having to spend time in a hospital where my language skills would be inadequate for the task. Frankly, even having it happen in London or Cambridge where I go most for work, isn’t appealing.
        I’m glad you had no bad effects; you clearly had a superb surgeon.

  12. I’m a retired gynecologist. MOST likely you are at least temporarily not ovulating. This leads to abnormalities in the estrogen levels and their effect on the uterine lining. When the level of estrogen is up, the lining thickens and when the level drops (without ovulation which triggers a supply of progesterone) uncontrollled and irregular bleeding occurs and it can be dramatic. If it continues, anemia can occur.
    However, this is only the most common thing. The bleeding can also – at your age- be a sign of a potentially malignant situation. That is endometrial hyperplasia.
    There could also be fibroids. These are benign tumors that sometimes cause heavy bleeding.

    There is a rational way to deal with all this. As with any illness, an accurate diagnosis is essential. This would include a pelvic exam, an endometrial sample , and perhaps an ultrasound. Treatment would depend on the severity of the problem and could range from nothing to hysterectomy.
    You should be given the facts and the possible treaments and the likely outcome of each. Then you can decide what to do.

    • James, part of the issue is down to the fact that I live in a rural area, with one of the worst hospitals around. After the mirena was fitted, and I came back six week later for the obligatory check-up, there was no pelvic exam. I was just asked, is it OK. Given that I screamed blue murder when it was fitted, passed out first when they took a biopsy and a second time when they fitted the thing, I was surprised they didn’t do a pelvic exam to check it was in right. I haven’t had an ultrasound for over a year and no one even discussed with me the last one. The radiographer was helpful but she told me she wasn’t allowed to actually tell me anything much. So, the fact that it seems like I may have (as well as small fibroids) a calcified one, plus the rare condtion of double womb(again, from what the radiographer saw and puzzled over for ages) and an extensive case of endometriosis, not to mention the possiblity(again the radiographer being naughty, “Ask him about… because I can’t tell you!”) of adenomyosis) simply doesn’t seem to be of interest.
      When enormous sums of money are being poured into IVF, there is almost nothing going into this sort of research.
      Thanks James.

  13. Viv – come back as a man? Now that would be a step backward, don’t you think? Now, when it comes to getting good doctor care, it pays to be aggressive. Weepy doesn’t cut it as doctors are prone to think in terms of neediness rather than medical need facing this phenomenon. Be assertive and you will be heard.

    • Retired Eagle, i think you misunderstand me. I very seldom get weepy with doctors, plus when i do, it’s very much a result of extreme hormone activity (say, after giving birth) I’m pretty tough and assertive; but it doesn’t seem to work. They just get shirty with me instead. the doc yesterday did say to me I was a difficult customer; I’m not entirely sure what he meant by that as he was Iranian and his English wasn’t perfect.
      And while I do admit women have things men could envy, as far as I can see it, men have a generally easier time of life for a significant part of it anyway.
      I think I’d just not opt to come back as anything; I don’t see myself as boddhivista material anyway!

  14. since you still have endemetriosis, I would think that could be the issue. I had that while still in my teens and they put me on birth control pills to try and mimic pregnancy which they felt would help. It did work for me but that was in the dark ages and I doubt they would subject anyone to so much hormone therapy now although some level of birth control pills are still recommended. There are laparoscopic surgical procedures to remove the tissue floating around where it doesn’t belong — not the same as an hysterectomy. Caveat: not a doctor, just a woman. Best wishes

    • Susan, I’ve had lazer removal of endo once; the second time they tried, they gave up without starting because there was simply too much. I was told I wasn’t the worst case they’d ever seen but I was up there among some of the worst cases. They even showed me a photo of the inside of my pelvic cavity to show me how bad it was and even as a non doctor it was quite clear how extensive it was. Too much for lazer treatment unless I was out for about four hours, they said.
      Thanks!

  15. Actually, the earlier you start your menses, the longer you will have it as a rule. Okay, hitch your big girl panties and go back to that dr. or if you can get to another one do that. I don’t know how your health care system works. When you tell a medical person that you are bleeding a lot, their understanding of “a lot” may be different from yours. Give your medical care giver the following information:
    -How often you bleed (use a calendar if necessary)

    -How much = number of pads you use in the number of hours, how big the area of blood is on the pad, or if it is totally saturated. If the blood over saturates the pad and runs down your legs or how big a spot on the bed.

    -If you are in pain, describe the pain……..dull, aching, stabbing, constant. How long it lasts and what you must do to get relief.

    -Ask about the possibility of an infection

    This is factual information that will give your health care provider information they need to begin to properly evaluate you.

    We are talking about your health and your health care provider is paid to provide medical care to you!!

    • Hi Kay,
      big girl panties!!!
      I’ve actually done all your suggest already; I always take my diary with me and try and show them. They barely glance at it…I’m very precise about everything. Obviously, it doesn’t raise warning signs on their radar, what I tell them.
      Hence my level of frustration. Don’t get me started on the whole mental health side of things; that’s an even nastier kettle of fish over here, t get any sort of help with mental illness!
      thanks!

  16. “he’s also a fundamentalist christian who believes that women who have caesarians will go to hell”

    Huh???? That’s a new one to me. These fundies get crazier and crazier. God spare any woman who ends up in his care (?).

    Can’t say anything medical but just hope you find a satisfactory solution so you are not bleeding so heavily. It can be scary.

  17. Have they checked for a “missed abortion”? – that’s when a foetus has died in the uterus but for a while the pregnancy indicators still test positive (nothing to do with any attempt to abort it). That was the reason for the very heavy bleeding I suffered. Had to have a dilation and curettage to remove all foetal tissue, and the bleeding eventually stopped.

    • It was actually my daughter’s suggestion of this, but I’m almost sure I wasn’t pregnant. Last misscarriage I had felt quite different.
      But I will look into it if it persists.
      Thank you.

  18. Hi Viv,

    These two were busy like crazy so I couldn’t make it earlier…and when I finally managed…

    I don’t have much advice to offer. I hope that you get well soon. Please take care of yourself, and do talk to your pain management doctor. Even if he may not be able to help you with the bleeding problem, he might make some good suggestions.

    You take care of yourself.

    Licks n wags,
    Oorvi

    • Thanks oorvi.
      My poor dog is hoping for a walk later so I think I might just go lie down and rest for a while.
      You take care now too; make your humans take it a bit easier, if you can, or at least some good walks or rides in the car.
      love ‘n’ biscuits,
      Viv

  19. i haven’t had the chance to read all of this, but if you’re bleeding a lot, natural bio-identical progesterone is the answer….i had terrible problems myself with heavy period bleeding all my life and then started using it 3 weeks of the month – wow, what a difference! it affects the build-up of the lining in the first 10 days….

    it’s so easy and amazing

    i use compounded sublingual tabs….

    i have to go back and read your posts later, but please look into this!

    http://www.womensinternational.com/ask_a_pharmacist.html

    http://www.endometriosis.co.uk/

    her book is supposed to be amazing, i love it alread

    have you had excision surgery for the endo? an expert can help you, i think in england it’s called keyhole

    this is a site that has doctor recommendations and help, google it if it doesn’t come up

    erc.activboard.com/

    • Lola, many thanks for all this. I shall look into it soon.
      Yes, I’ve had keyhole surgery about three times, once for endo, once for an ovarian cyst(chocolate cyst) and once for appendectomy. The last time they tried they closed me up as the endo was to extensive.
      In England you can’t pick and choose your doctor, at least not on the NHS. Within a department you can ask for a different doc, but you can’t just approach a doctor and ask to be seen.
      cheers

    • I had a look at the site, and discovered I actually already have the book. I do think i read it but now I can’t remember anything. I do also recall trying some of the nutrition advice, quite a lot of it, but didn’t find it helped at all, and made me feel even more that it was going to rule my life.
      I’ve ploughed through quite a number of books and websites and in the end it just becomes incredibly confusing as it often ends up conflicting with itself, as for me there are a number of problems so closely intertwined it becomes a mess. If i take extra progesterone I have side effects from that…and so on and so forth.

  20. i caught one other posts…docs make me so mad….blood tests are not pointless, i’ve had many that have helped

    i had very low progesterone, and using it has helped me – i haven’t had a migraine in years

    what is wrong with a doctor who says blood tests are pointless? i am sorry, they’re either undereducated or lazy

    weird weird weird

  21. one more quick posts, for women with endo, these are the places for info

    centerforendo.com

    endometriosissurgeon.com

    endoexcision.com

    pelvicpain.com

    endo-resolved.com

    johnleemd.com (for more progesterone info)

    naprotechnology.com

  22. Your bleeding is not a mental health problem. It is real. The retired gynecologist is totally correct. Sounds like they are pretty much ignoring what you are telling them. You might copy the retired gynecologists suggestions and show them. He is right. You need a pelvic exam, ultrasound and possibly an endometrial biopsy to determine your problem.

    I am sorry you are having to go through all this. It is so frustrating when you feel that you have not been heard by your health care provider.

    • If you’ve ever had any mental health issues in this country(as a woman certainly) it seems as though every sodding thing gets blamed on that.
      I’m reminded of Spike Milligan’s words for his gravestone(in English and Gaelic). “I told you I was ill!”.
      The uterine biopsy they took in early November was normal; which I suspect is why they don’t take it further.
      The funny thing about blood tests is the reluctance to take anything they say seriously. When the ovarian cyst was being invesitgated, I had some blood tests, including the one for ovarian cancer. It came back with high enough levels to worry me, but they dismissed it and said, oh other things can give that reading….
      Thanks Kay.

  23. Hi again. Thanks for stopping by my blog and commenting. Yes, you can add me to your blogroll. I would like to add you, too, although I generally use a feeder.

    I do hope you get some sort of resolution to this problem. My family has had its share of medical mysteries, and it’s maddening trying to get accurate diagnoses and astute doctors.

  24. Not entirely sure my comment was accepted – everything froze. Sorry if this is a duplicate:

    Hi again. Thanks for stopping by my blog and commenting. Yes, you can add me to your blogroll. I would like to add you, too, although I generally use a feeder.

    I do hope you get some sort of resolution to this problem. My family has had its share of medical mysteries, and it’s maddening trying to get accurate diagnoses and astute doctors.

    • Hi, Alice,
      have added you and am happy to be added to your blog feeds.
      I’m off beekeeping in a bit, but I’m feeling a lot brighter for a brisk walk!!
      cheers,
      Viv

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