pain in lower abdomen, fibroids - TMI

[Phoenix]

Hi everyone,

(Before you read on, I''d like to let you know there''s quite a bit of infor here, some of it rather private, so if you''d rather not know, I''d suggest that you don''t carry on reading).

Here I am again with another request for help:

I''ve been having pain in my lower abdomen now for about 6 years - on and off. It started with an operation at a local hospital to investigate whether I had blocked tubes (when we were trying to conceive). Well, I didn''t, but unfortunately, I developed a severe reaction to either the dye or the rubber tubes (when they flushed the dye up my tubes) which ended up developing into a severe infection. It was soooo bad I couldn''t laugh or even sit up in bed without getting this excruciating pain (it was like someone thrusted an extremely sharp serated knife into my tummy and twisted it). Well, I took 5-6 courses of antibiotics and the infection went away. BUT the pain came back a few months later, and then it went away for a few months and came back again. Exactly the same pain, on both sides of my lower abdomen. I''ve had numerous vists to the gynae''s, GP''s, have had CT scans, MRI''s you name it and NOT a one person can figure out what''s wrong with me!

Well, it went away for about a year and then when I had my IVF, it came back. The same exact pain and again, several visits to the doctors revealed nothing.

It went away again and about 6 months ago, the pain came back, except it is different this time. The severity of the pain is much less (on a scale of 1 to 10, 1 being the mildest pain, 10 being the worst, it used to be like a 15; but now it is more like a 6 or 7) and it is much more frequent (the pain attack used to occur once every week or two; now it''s almost every day or every two days). I''ve had another CT scan as well as the "usual" stuff (meaning ultrasound, physical examinations). again, zip!!! It is so very frustrating!!

(Some doctors have suggested that maybe I have some intestinal/ bowel problems or endo, but I have no such symptoms, which I understand usually include constipation, pain in your back, blood in your stool, blood in urine etc.)

The only thing I''ve learnt from the latest CT scan (which came back showing that I have no major problem which needs to be taken care of immediately/ urgently, like cancer, so at least I should be thankful for that) is that my largest fibroid (I have several, three are fairly large) is almost 5cm in length and 3.5cm in width. My gynae seems to think that I should have a laproscopy (key hole surgery through my belly button) to have it "cored" out , along with the larger fibroids. Alternatively, she thinks I can consider "bikini line'' surgery whereby she would go in through a 5-6cm incision (kind of like C-section incision) to take out all the fibroids. Another alternative is "embolization" whereby they cut off the blood supply to the fibroids but this might cause early menopause and in some extreme cases might be ensued by a hysterectomy!!

The other thing to note is that I have extremely heavy periods (I have to change my tampons, the super plus type, every two - three hours) and they also tend to be irregular. This has only been the case for the last two years. I also have a problem with my thyroid (Hashimoto''s which might develop into hypothyroidism if I don''t do something about it, which I am). I don''t know if my heavy problematic periods are to do with my thyroid or my fibroids or some othe problem or a combination of two or more of these.

I understand from this gynae (my long time gynae) and another gynae is that laproscopy may also help to pinpoint the cause of my pain which to this day remains a mystery.

I''m soooo fed up with all these health problems. Whilst I''d say I''m generally an optimistic person, all these have really been weighing on my mind. I just wish I knew what the h*** was the problem so at least I would be able to do something about my pain/ my fibroid problem (more the former than the latter).

So HELP!!!! I''m at the end of my tether. I wish there was something I could do.

Pls give me your suggestion/ comments/ suggestion. Even if you''d like to share similar problems, I''d still like to hear from you. I feel like a bit of a freak, honestly!! I personally don''t know of anyone else who has so many health problems (well, apart from my dear mommy who''s now passed away, who incidentally had a lot of health problems which basically stemmed from her thyroid but that went undiagnosed which eventually led to other complications which led to her eventual death - but that''s another story altogether).

THANK YOU!!!

 

[joflier]

I don''t know much about fibroids, but have they done your CT scans both with and without contrast? (drinking the kool-aid like stuff)? It sounds like the laproscopy might be the only way to truely determine what''s going on at this point, though that''s probably isn''t a guarantee, but if your in a lot of discomfort, it may be the best option for you. It would be interesting to know what caused your infection in the very beginning....did the Dr actually say it was from the dye or tubes? That seems odd to me. I do a lot of work with the dyes, and if someone has a reaction to them, its usually in the form of itching, sneezing, hives, some swelling, and it goes away very quickly. Are you allergic to latex or rubber that you know of? If not, I wouldn''t think the tubes would be involved with that either. For that procedure, was it an actual surgery where you were put under, or was it a hystersalpingogram, where you would be awake?
I wish i knew more, but hopefully you can get things figured out soon so you can have some peace of mind.

 

[Phoenix]

Date: 3/3/2008 9:01:06 AM
Author: joflier
I don''t know much about fibroids, but have they done your CT scans both with and without contrast? (drinking the kool-aid like stuff)? It sounds like the laproscopy might be the only way to truely determine what''s going on at this point, though that''s probably isn''t a guarantee, but if your in a lot of discomfort, it may be the best option for you. It would be interesting to know what caused your infection in the very beginning....did the Dr actually say it was from the dye or tubes? That seems odd to me. I do a lot of work with the dyes, and if someone has a reaction to them, its usually in the form of itching, sneezing, hives, some swelling, and it goes away very quickly. Are you allergic to latex or rubber that you know of? If not, I wouldn''t think the tubes would be involved with that either. For that procedure, was it an actual surgery where you were put under, or was it a hystersalpingogram, where you would be awake?
I wish i knew more, but hopefully you can get things figured out soon so you can have some peace of mind.

Thank you so much for your reply, Joflier. I had the CT scan done with the contrast (that stuff is foul, with a big "F" btw!!). The infection seems to have stemmed from an allergy to the dye, rubber or it could have been that my tubes might have been blocked but they got "forced" opened somehow, are some of the explanations I''ve been given. I was very traumatised after the procedure (it was the hystersalpingogram, and I was fully awake and begged them to stop when it was sooo painful but they didn''t stop until i practically yanked the tues out of their hands!!) and I had some other problem with they gynae at this hospital too (but that again is another story altogether) that I stopped going to this hospital totally. So I really don''t know exactly what cause the pain and the subsequent infection.

My concern about the laproscopy is that it is invasive and with all invasive procedures, there''s a whole host of accompany problems, from the point of view of "general" problems (ie. you''re going under etc.), to problems specifically associated with this one procedure (which I don''t know much about), hence the hesitation.

Please keep your comments/ input coming. I could defiitely do with all the help I can get. Thank you.

 

[jas]

Although I have a couple fibroids (one of them 10 cm!), I don''t have too much to add. I''ve had the hysteroscopy and my biggest issue was that I researched fibroids and treatments SO much that I scared the poop outta myself. Sometimes TMI is TMI, ya know?

Unless I misread your post, I am a little shocked that no one "picked up" on the fibroids as a possible cause of the pain before this.

Are you able to get a second opinion?

 

[tiffanytwisted]

Phoenix,
Sorry to hear you are having so many problems. I can relate (to the fibroid part anyway.)
About 5 years ago I started having very heavy bleeding. My gyno at the time just kept changing my birth control pills in an effort to stop the bleeding. After a few months of that I asked for an ultrasound. They found 1 fibroid which was about 4 cm. Not huge by fibroid standards but enough to irritate the blood vessels in my uterus to bleed! Even after the fibroid diagnosis that gyno was certain she could stop the bleeding with bcp''s. when that didn''t work she recommended lupron and I did 2 shots of lupron. The lupron stopped the bleeding long enough for me to find a new gyno. I had researched the fibroids a lot at that point and felt fairly certain that mine needed to be removed. My blood levels were very low at this point. I went to 3 more gynos before I found one I was comfortable with and who agreed that it needed to come out.
Because of where the fibroid was located, it was on the posterior side of the uterus and was fairly embedded in the muscle, she opted to do the abdominal incision (like a c-section incision) vs the laparoscopy. I had the fibroid removed in November 2005, there was actually another small one that hadn''t shown up on ultrasound that she removed also.
I had looked into embolization and they don''t recommend it for people who want to have children. My understanding is that it hasn''t been done enough to have conclusive data as far as preserving fertility. I do think that if you go to someone who is experienced and well trained in embolzation that the risks are very low. An interventional radiologist who specialized in uterine artery embolizations would probably be the best bet.
There is a correlation between thyroid levels and heavy bleeding, so getting your thyroid levels normalized might help with that.
I have also had laparasopic abdominal surgery (for an ectopic pregnancy) and I can tell you that the recovery time was much shorter than with the larger incision. I was amazed. The next day I had a little soreness and by about a week later I was back at work. It sounds like this might be a good option for you, while it IS surgery the recovery is pretty quick and if they can get some answers for you it might be worth it!
Concerning your pain I don''t have much advice there. I know that for some people fibroids can be extremely painful, although I did not have that side effect. If it weren''t for the bleeding I wouldn''t have even known the little ''roids were there!
One thing I really learned from this experience is you have to advocate for yourself! I''m a nurse and I still stayed with my first doctor for probably longer than I should have. YOU have to keep searching for answers, and sometimes that means asking another doctors advice and getting a second opinion.
Good luck and keep us posted!

 

[joflier]

Yeah, I''ll ditto going to see a 2nd or even 3rd doctor. So, ok, hysterosalpingogram. I work in radiology so I used to assist on those procedures. I''m pretty convinced that you didn''t have an allergy to the dye. Or anything allergy related for that matter. You wouldn''t be in pain from that. Although what can happen with those exams, is that when they use all that pressure, and often times tell you, that no, your tube weren''t blocked....well sometimes they really were, but all that pain and pressure usually means the blockage just got pushed out. It could be that whatever was blocking your tubes that got pushed out could have caused the infection if it got inside the utuerus at that point.

I do understand the hesitation though on anything surgey related. Oh do I. On the one hand, you deserve to know what''s going on, to be able to live pain free. On the other hand, if the pain isn''t too bad right now, and you have clean CTs and MRIs, I don''t think its a life or death situation to have the lap. done, at least not right away. But again, to get to the bottom of the problem, sometimes you just have to get inside. I don''t know much about fibroids, but they can cause some people a lot of pain. But I think that chances are, if you want to compare, the pain from the lap. would probably a much easier experience than that of your hystero.....

 

[Phoenix]

Date: 3/3/2008 9:34:01 AM
Author: jas
Although I have a couple fibroids (one of them 10 cm!), I don''t have too much to add. I''ve had the hysteroscopy and my biggest issue was that I researched fibroids and treatments SO much that I scared the poop outta myself. Sometimes TMI is TMI, ya know?

Unless I misread your post, I am a little shocked that no one ''picked up'' on the fibroids as a possible cause of the pain before this.

Are you able to get a second opinion?

Thanks for your reply, Jas.

I''m not sure if this gynae was talking about a laproscopy or hysteroscopy but I seem to remember she said the former. I''ve just done a little research and it seems that hysteroscopy is the usual procedure to remove fibroids. To be honest, I am not sure what''s the difference between the two.

My fibroids were "discovered" in 1998 by another gynae whilst we were living in Hong Kong. I''ve seen several gynae''s but no one is able to tell me whether the fibroids are the cause of my current pain. They say it is doutful but cannot say categorically that it isn''t. I tend to agree with them, as the fact that I''ve had the current pain only since 2002-3 kind of tells me that the fibroids are probably not the cause, but it started with the hystersalpingogram and the ensuing infection.

This (LT) gynae and another one I saw said the laproscopy will allow them to go inside and see what''s going on. It might help them to suss out the cause of my current pain but they don''t guarantee this. It is so frustrating not knowing what is the cause of the pain.

With the fibroids, this LT gynae says the laproscopy will allow them to remove the larger fibroids. I asked what''s the risk of not having them removed. She says they will just get larger and will be more difficult to remove later on. IF (and this is a big "IF) the fibroids do have anything to do with my current pain (which as I mentioned I don''t think is the case, but it cannot be ruled out totally), then it may be a NECESSITY to have them removed but at the moment I''m just not sure.

 

[somethingshiny]

PHX, I''m so sorry you''re miserable. I completely understand.

I had a laprascopic procedure to explore and then remove cysts and endometial tissue several years ago. Then, I was put on Lupron (which made me an evil woman) for a few months. After that, it was suggested that I either conceive immediately or go on BC. We had been trying to conceive for several years so we stayed on that course. I eventually conceived and carried and my son just turned 2.

Now, the long version. From my first period, I flowed VERY heavily. I wore a tampon and a pad just to get through one class before I could change. I had irregular periods for years. I usually had a period every 18 days that lasted 9. I went on BC at 17 to try to regulate them a bit. I stayed on BC until I got married 2 years later. It definitely helped regulate the periods and ease the severe cramps. After a year of TTC, I went to the dr to find out why we hadn''t. He did the hystosalpingogram which showed nothing was wrong with my tubes. I saw 3 drs in 2 yrs. No one could tell me why I wasn''t carrying and why I had so much pain. It got to the point where I dreaded being intimate because of the severity of pain. I miscarried numerous times. Finally, 4 yrs of going to drs, I found one who immediately diagnosed me. All he did was ask me a couple questions and did an internal exam. I was scheduled for a laprascopic "exploratory" surgery. During the surgery, the doc found dozens of cysts (apparently they pop often and that''s when the most severe pains would come), and tons of endometrial tissue. One of my tubes and ovaries were so gunked up, they were attached behind my uterus and onto my intestines. After recovery and the Lupron shots (which take away periods), I was 100 times better. I never knew you could have a period that didn''t make you want to die. A year and a half later, I got pregnant with our son.

I hope this helps you even a little bit.

 

[lyra]

I'm so sorry Phoenix. I know about that 15 out of 10 pain. I had a follicular cyst burst a few years ago. The pain sent me to the hospital for 5 days, and I developed a high fever. They gave me very heavy duty antibiotics and *morphine* because the pain was so bad. They couldn't do a CT scan because I am allergic to contrast dye, and they actually refused to do a "challenge" CT scan, which is riskier, but I was willing to do anything to find out what was going on. They were going to operate, but as usual here (Canada), they decided not to because I hadn't died yet or anything.

Now I'm on metformin for my diabetes, and that has helped regulate my periods a lot. But every month for the last 4 or 5 now, I'm getting that awful pain again. But it's just like you describe: it's only a 5 or 6 out of 10, and it does go away, whereas with the cyst it stayed constant for about 10 days straight until the rupture had "healed" or whatever. They were never too clear on the details since they didn't operate and only used ultrasound and CT without dye.

I've had laprascopic surgery, a tubal ligation several years ago. It was no problem as far as recovery went. Just a bit woozy for 2 days. I had 2 c-sections, and the first one required a lot of recuperation time as far as the incision and surrounding area were concerned. I would definitely do laprascopic again, it was really nothing at all. I could also use my old incision line again without much trouble, as the second c-section gave me no pain whatsoever there.

My mom had to have a hysterectomy at 41 when she had a grapefruit sized fibroid. She thought she was pregnant and showing! My sister has also had fibroids. Usually they say to leave them, which I've never understood. Anyway, just thought I'd share what little advice I might have.

ETA: the pain for me alternates sides. The cyst was on the right side, but now I get pain on either side. I double over (and swear usually!) and it freaks my DH out a lot! I mostly just try to keep on with what I'm doing because it's becoming a chronic thing. Guess I need to get it checked out, but I have no OB-GYN. argh. I hate doctors too. I suspect my problem is PCOS, polycystic ovarian syndrome or whatever. Sheesh, time to go to bed, I can't even make sentences here!

 

[swingirl]

Are you trying to get pregnant? I had very heavy periods all my life. Had no problem getting pregnant. Finally my periods were so heavy that I was anemic and having heart palpitations. My doctor said I could have a stroke from the lack of oxygen in my blood.

I knew I had fibroids but they were getting worse. So my gyno removed my uterus through my belly button! They do the laproscopy surgery with 2 tiny cuts one on each side of your lower belly and the cutter/sucker through the belly button. (sorry I am not very technical) She removed my uterus only and left my cervix, ovaries and everything else. I have no periods, no early menopause, bladder is good. The only thing is I have some adhesions from my C-section and those cause a sharp pain when I sneeze. Wonderful outcome for me! But if you are trying to get pregnant you will need the fibroids removed but not the uterus. Any open surgery will leave some adhesions. I also head about the embolization but the actual surgery was very easy, recovery was a breeze. I had zero pain after the procedure.

By the way, my son has Hashimoto''s and has been on the medication since he was 15. Sorry about your mother.

 

[swingirl]

I''ve got to say I always thought I was the only one with heavy 7-10 day periods. It can be embarrassing! I have actually changed tampons in the car when I knew in another 10 minutes it would be a desperate situation! I''ve stayed home and taken long showers on days when it was really heavy. It''s like, what''s the point of getting dressed, I''ll just be changing again! Anyone with similar experiences?

 

[Phoenix]

Date: 3/3/2008 10:03:16 AM
Author: tiffanytwisted
Phoenix,
Sorry to hear you are having so many problems. I can relate (to the fibroid part anyway.)
About 5 years ago I started having very heavy bleeding. My gyno at the time just kept changing my birth control pills in an effort to stop the bleeding. After a few months of that I asked for an ultrasound. They found 1 fibroid which was about 4 cm. Not huge by fibroid standards but enough to irritate the blood vessels in my uterus to bleed! Even after the fibroid diagnosis that gyno was certain she could stop the bleeding with bcp''s. when that didn''t work she recommended lupron and I did 2 shots of lupron. The lupron stopped the bleeding long enough for me to find a new gyno. I had researched the fibroids a lot at that point and felt fairly certain that mine needed to be removed. My blood levels were very low at this point. I went to 3 more gynos before I found one I was comfortable with and who agreed that it needed to come out.
Because of where the fibroid was located, it was on the posterior side of the uterus and was fairly embedded in the muscle, she opted to do the abdominal incision (like a c-section incision) vs the laparoscopy. I had the fibroid removed in November 2005, there was actually another small one that hadn''t shown up on ultrasound that she removed also.
I had looked into embolization and they don''t recommend it for people who want to have children. My understanding is that it hasn''t been done enough to have conclusive data as far as preserving fertility. I do think that if you go to someone who is experienced and well trained in embolzation that the risks are very low. An interventional radiologist who specialized in uterine artery embolizations would probably be the best bet.
There is a correlation between thyroid levels and heavy bleeding, so getting your thyroid levels normalized might help with that.
I have also had laparasopic abdominal surgery (for an ectopic pregnancy) and I can tell you that the recovery time was much shorter than with the larger incision. I was amazed. The next day I had a little soreness and by about a week later I was back at work. It sounds like this might be a good option for you, while it IS surgery the recovery is pretty quick and if they can get some answers for you it might be worth it!
Concerning your pain I don''t have much advice there. I know that for some people fibroids can be extremely painful, although I did not have that side effect. If it weren''t for the bleeding I wouldn''t have even known the little ''roids were there!
One thing I really learned from this experience is you have to advocate for yourself! I''m a nurse and I still stayed with my first doctor for probably longer than I should have. YOU have to keep searching for answers, and sometimes that means asking another doctors advice and getting a second opinion.
Good luck and keep us posted!

Thank you, Tiffanytwisted, for your kind words, for sharing your story and for the suggestions.

I was initially quite keen on embolization (since it isn''t surgery per se, or so I understand), but the idea of getting an early menopause and / or having to have a hysterectomy is not something I''d even want to think about. We were trying to have childen but have now given up due to our age (I''m 42 and hubby is almost 4. Nevertheless, I''m not sure that this would be the best option for me.

I think the laproscopy/ hysteroscopy may be the way to way, since the other one (the c-section like/ bikini-line procedure) involves a longer recovery period, 4 weeks versus 2. But they gynae did say that the bikini-line would allow her to see more clearly what''s inside.

I definitely agree that I need to go back to the other doctor to get her opinion too. She''s the one that suggested a few years ago that I should have laproscopy and so far, I''ve not gone for it. Now my fibroid is getting larger, I might not have a choice any more.

 

[Phoenix]

Date: 3/3/2008 11:03:37 AM
Author: joflier
Yeah, I'll ditto going to see a 2nd or even 3rd doctor. So, ok, hysterosalpingogram. I work in radiology so I used to assist on those procedures. I'm pretty convinced that you didn't have an allergy to the dye. Or anything allergy related for that matter. You wouldn't be in pain from that. Although what can happen with those exams, is that when they use all that pressure, and often times tell you, that no, your tube weren't blocked....well sometimes they really were, but all that pain and pressure usually means the blockage just got pushed out. It could be that whatever was blocking your tubes that got pushed out could have caused the infection if it got inside the utuerus at that point.

I do understand the hesitation though on anything surgey related. Oh do I. On the one hand, you deserve to know what's going on, to be able to live pain free. On the other hand, if the pain isn't too bad right now, and you have clean CTs and MRIs, I don't think its a life or death situation to have the lap. done, at least not right away. But again, to get to the bottom of the problem, sometimes you just have to get inside. I don't know much about fibroids, but they can cause some people a lot of pain. But I think that chances are, if you want to compare, the pain from the lap. would probably a much easier experience than that of your hystero.....

Thank you for posting again, Joflier, and your insight.

That's interesting that you said one can't get allergic to the dye. I tend to be very prone to allergic reactions with my skin, you know anything heavily perfumed, rubber gloves etc, certain chemicals (for eg. those in household detergents, even skincare products, soap etc., certain fibres like wool ). So it may have been an allergic reaction to the rubber tubes.

It's interesting that you said that something that might have been inside my tube(s) might have got pushed out into the uterus. What coudl this something be? I'd really appreciate it if you could give me an example(s). Does it apply if the pain is located at both sides of the lower abdomen and usually when I get the pain, it's one side or the other and very rarely the pain occurs at both locations at the same time?

I agree that for now, it isn't a matter of life and death and I don't have to have any procedure straight away and the period pain that is associated with the fibroids is bad but not unbearable. It is the other unknown pain that is a concern and yes, I'd love to be able to live pain free. If only I could do something to help figure out what it is. Having a lap/ hysterscopy would help to pinpoint the cause of the problem. Also, the largest fibroid may get larger if I leave it longer, and then it'd be so big that laproscopy/ hysterscopy wouldn't be an option any longer. But I think we're talking a year or so ( I could be totally wrong here). I also agree that the pain from the lap/ hysterscopy would not be that bad but what I'm really concerned about is the complication or complications that might occur from the procedure (case of "once bitten, twice shy" - you might say).

If you have any other comments or insights, I'd really like to hear from you again.

It has been quite revealing to learn about the dye, and the blockage. If it indeed had been the rubber tubes or the blockage getting pushed out, is there anything I can do now to confirm this and more to the point, doing something about it?

Thank you so much.

 

[joflier]

Well, I should clear up first, that you CAN have an allergic reaction to the dye, but the normal symptoms for a dye reaction are something totally different from what you had. Granted, anything is possible though. And also the allergy symptoms are only temporary, and with a dose of benadryl are usually gone. I don't know much about rubber allergies, but being that your skin is sensititve you may have had some type of reaction from that, but again, I doubt that would still be afflicting you several years after the fact.
As far as what the blockage would be, it really could be a number of different things. Just a few, would be a misplaced ectopic pregnancy, still in the early stages. Also just previous infections (pelvic inflammatory disease), endometriosis, ruptured appendix, etc. Another cause, that I think may apply, is fibroids. It is possible to get fibroids in the fallopian tubes. Also, just plain mucus(body sludge), that we all have from time to time. This might be the most likely thing that you had, and something that would be pushed out fairly easily, and if pushed out could cause an infection. At this point, after so much time has passed, there really is no way of knowing what exactly it was. Being that you had numerous coarses of antibiotics, I don't think the infection would still be causing you the pain your having. But again, anything is possible. It is possible, that if the infection was REALLY bad, that there could have been some scarring from it, and maybe as you reach a certain point in your cycles, the tissue might get inflamed and it could be in the same area where you have the fibroids......Does your pain come at specific times of each month? If your not sure, try and keep track of which week of your cycle the pain occurs or if its just continuous.
Do you know where the location was of the original infection? Uterus, cervix, tubes....etc I hope this is helps you. Now my disclaimer, keep in mind, I'm not a medical doctor, so the ideas I'm throwing out there can only be taken as just a friends advice and thoughts.